Georgia Tann Abducted Children And Sold Them To Celebrities And Pedophiles, Making Millions
People | November 8, 2019
Have you ever wondered why someone would get it into their head to steal babies and flip them like so many houses?
Well, you’re in luck, friend. Buckle up, and hold onto your babies, because it’s time to learn about Georgia Tann: pianist, social worker, and baby-napping enthusiast. You might call her a triple threat.
Cue Georgia’s Birth
Beulah George “Georgia” Tann was born in Philadelphia, Mississippi, and by all accounts, was not baby-napped. Wouldn’t that be a great origin story?
In flat reality, however, Tann was raised by her father, Judge George Tann, and her mother, Beulah Yates. Judge Tann was hellbent on Georgia playing the piano, and play she did, right through college, despite her apparent loathing of the forced musical rigor. Allegedly, she had aspirations toward law, but her father discouraged her on the sound basis that chicks can’t argue well. Apparently a bit of a masochist as well as a sadist, Tann nonetheless majored in music and graduated with a degree from Martha Washington College in 1913. Though she took and passed the bar exam, she ultimately studied social work at Columbia University for two summers. Once Tann had finished her education, she finally unleashed all the fury that only years of mandatory piano lessons can give a person. By 1924, she got into human trafficking. What, were you expecting a scene phase?
The Worse-Than-A-Scene Phase
In 1922, Tann began working at the Mississippi Children’s Home Society, but she got fired for “dubious child-placing practices” that official documents alarmingly don’t elaborate. Following this termination, she and her “gal pal,” Ann Atwood, packed up and moved to Memphis, Tennessee, where Tann became Executive Secretary at the Shelby branch of the Tennessee Children’s Home Society, who apparently didn’t believe in background checks. At the time, adoption was not popular or chic, and even worse for someone like Tann, it was not lucrative. You could adopt yourself a brand new baby to the tune of just $7 dollars, or a little over $100 in 2019 money. For perspective, you could buy one new iPhone, or you could buy eight babies. They were, shall we say, undervalued in the market. Tann saw that market, and she had a solution: arrange expensive out-of-state adoptions, skim off the top, and then literally shred the evidence. Foolproof! The only problem, at that point, was procuring enough marketable babies. It seems that Memphis simply didn’t produce enough orphans for Tann’s liking, and there were only so many she could coerce from poor families, so she started straight-up stealing them. Think your child is safe in the hospital?
Nope: Nurses and doctors were in on it. What about at the park?
Wrong again they could be taken right off the playground. Have you just given birth and aren’t fully aware of your surroundings due to, you know, giving birth?
Tough luck; you’ve just been baby-napped. It’s estimated that Tann was responsible for trafficking more than 5,000 children throughout 48 states. Most of these children were placed with affluent families in New York and California, and some of these rich parents were even celebrities, including Joan Crawford, Mary Pickford, Ric Flair, and Herbert Lehman. (Don’t worry: There’s no reason to think Tann’s clients knew the children they adopted were kidnapped, so you’re free to continue enjoying the Golden Age of Hollywood.) If you were lucky, you were placed with a wealthy family that was stable, sane, and even loving. If you were unlucky, your experience ran the gamut from being returned to the orphanage to plain, old death. Yes, seriously.
Speaking of Death
Tann didn’t immediately place all these babies into the semi-capable arms of the semi-affluent. Between the stealing and the selling, she had to put them somewhere. That place was Tennessee Children’s Home Society, where they were subjected to neglect that included the denial of medication and food your basic kids-definitely-need-it stuff. Many of the children were also straight-up abused, sometimes sexually, sometimes by Tann herself, having apparently looked in the mirror and thought “Nope needs to be more cartoon-villainy.”
According to one report, the children were “dropping like flies” about 500 flies, to be exact. More of a swarm, really. You might think that surely, these many children weren’t disappearing without consequence, but alas, gentle reader, they were. Thanks to her lucrative scheme, Tann was friends with quite a few of the well-to-do around Memphis, including Judge Camille Kelley and Mayor E. H. “Boss” Crump, and it’s not like the kind of person who’s willing to sell children is above a little bribery. Ever the ambitious sort, Tann even used her “success” to befriend Eleanor Roosevelt, though it’s doubtful that the first lady knew of Tann’s affinity for infanticide.
Okay, But How Much Did She Make?
As mentioned, adoptions in Tennessee at the time went for about $7 a (mom and) pop, and Tann decided to up that a bit. She charged for background checks that she didn’t do, documents that she didn’t file, inflated travel expenses, and for some older prospective parents, essentially for the privilege of getting to adopt anyone at all. She padded the bill so heavily that she made over $1 million peddling children. It’s really an appropriate word: She put ads in the paper captioned like Kewpie dolls, which no doubt appealed to the pedophiles she sometimes worked with when she couldn’t land a celebrity. The most marketable children?
Blue-eyed blondes. Despite making all this paper, she did very little of the actual paperwork. On top of that, she practiced exclusively closed adoptions. That means no information about the birth parents to anyone, and no information about the children to anyone, either. It’s a license to keep people in the dark, and if Tann’s enthusiasm for shredding is any indication, keeping people in the dark was the name of the game. In fact, at the time, Tann was viewed as a sort of champion of orphaned children. She made adoption more commonplace, and her insistence on placing children with well-to-do families meant that adoption became associated with the upper class. In other words, she put adoption in vogue. That’s how she managed to make the acquaintance of the first lady: She had become a small-time celebrity humanitarian, at least until people found out about all of the kidnappings and killings. That put a bit of a damper on her new friendships.
Did they get away with it, Scoob?
Pretty much, in the sense that no one went to jail. Tann died of uterine cancer three days before the state filed charges against the society. It’s rather poetic for a woman who was responsible for the deaths of so many children to die from her womb, but it can’t beat the regular ol’ justice system. Speaking of the justice system, that judge never did time, either. A handful of children have managed to get in touch with their birth parents, but thanks to Tennessee’s closed adoption laws and Tann’s shredding habit, many of the trails have long since gone cold. In 2015, a memorial to Tann’s hundreds of victims was placed in Memphis’s Elmwood Cemetery, where 19 of the unnamed children are buried. If you’re hoping that number is so low because the rest of the victims were identified and returned to their families to be laid to rest, we’re sorry to disappoint you one final time: Their bodies were simply never recovered. Sleep tight!
Celebrities open up about their harrowing miscarriages and devastation at losing a baby
Lacey Turner, Jane Danson, Izzy Judd and Natasha Kaplinsky have all suffered heartbreaking miscarriages – here, they bravely tell their stories
By Amanda Evans
- 17:02, 14 OCT 2020
- Updated17:10, 14 OCT 2020
Dealing with the heartbreak and trauma of losing a pregnancy is a grief that never leaves you. And it’s more common than many think with around one in four pregnancies in the UK ending in miscarriage. A new Channel 5 documentary Miscarriage: Our Story, on tomorrow looks at several raw and personal accounts of men and women who have suffered the loss of a pregnancy. The show also tells the stories of celebrities who open up about their own heartbreaking experiences of miscarriage.
Lacey Turner, EastEnders actress
Eastenders star Lacey was 29 and seven weeks pregnant when she suffered her first miscarriage. She had started bleeding heavily and suffered stomach cramps. Lacey, who plays Stacey Slater in the BBC soap explained: “In my gut I knew it wasn’t right.”
Adding: “I went back to work the next day, carried on like nothing had happened, which actually makes me really sad now looking back. I was probably walking around feeling so heartbroken yet nobody would have had a clue. There’s this whole taboo about not speaking about pregnancy and keeping it a secret until your 12 weeks and we sort of said it’s so early so don’t tell anybody.”
Having a baby was important for her and her husband Matt, who she married in 2017 and the pain of losing a much wanted child was heartbreaking. “I just felt so empty. I’ve gone from being so excited and we waited so long for this baby to feeling numb I guess.”
Lacey fell pregnant again. She said: “We got to seven weeks again and the same thing happened and it was so much worse than the last time. It was so much more blood. “I was so stressed out because we found out that there was still a tiny bit of the foetus left stuck in the lining of the cervix so therefore you can’t try again but I mean we’re talking about something that is the size of a grain of rice and I think for us that was really horrible because I felt like there’s still a bit of this baby stuck inside me and you know you just want it out.”
Finally after four months, she had an operation to remove the fetal tissue.
Lacey then fell pregnant again but as before, she started to bleed again seven months into her pregnancy. She explained: “I was sitting at home on Sunday and I started bleeding so I was like oh here we go again.”
Her doctor carried out a scan and told her the baby was still there but that he was prescribing her progesterone as her levels were low. Lacey said: “Right up until the end I thought until I have the baby in my hands and she’s breathing and alive and kicking then I can’t relax.”
Their baby girl, Dusty, was born in July 2019. Lacey and Matt are also expecting another child due in February. She said: “I feel so lucky to have her really. She’s changed our lives in so many ways. I feel a bit emotional. She’s incredible she really is.”
Lacey, 32, feels strongly that miscarriage should be talked about openly. She said: “Had I opened my mouth and asked someone a simple question of have you ever experienced anything like that I would have known that actually I would have had a handful of people to speak to and I wouldn’t have been lonely at all.”
Jane Danson, Coronation Street actress
Jane married actor Robert Beck in 2005 and they have two sons, Harry and Sam, but when she fell pregnant for a third time there was heartbreak for the couple. Jane explained: “I was actually folding clothes up for a friend who was pregnant at the time and it just said kind of a bit sad to put these away and my husband just said ‘well, you know if we get pregnant again we’ll just buy some more’ and I thought OK, so that obviously promoted a conversation and then quite soon afterwards we found out that we were pregnant for the third time so we were obviously really happy.”
The couple weren’t prepared for what they would be told at the 12 week scan. Jane said: “I remember lying down and she said, I won’t turn the screen around but don’t be worried, and then the room went really quiet. I just had a feeling, I knew something wasn’t right. And I remember she said you are pregnant, and that’s when my heart just sank because I knew that it had probably gone wrong, or the baby had died. Then they confirmed that that was it. but she didn’t turn the screen around, and I always remember this. She didn’t and I just wanted to see it, whatever stage it was at. i just wanted to see”
It took Jane three years to fully open up about how she was feeling. She said: “I don’t know why it just festered and lingered for a long time and I couldn’t find the words. I suppose for somebody who never stops talking it’s quite unusual for me.”
Well meaning people would tell her not to worry as she already had two children. Jane said: “Of course they’re my worlds and of course it goes without saying but at the same time I just felt I know but I wanted that baby. I wanted that baby as much as my other children.”
Natasha Kaplinsky, journalist and broadcaster
Natasha met her husband Justin at an awards ceremony and they married in 2005. After focusing for so long on her career, starting a family was a priority for the couple. After falling pregnant, Natasha was having her scan when she saw the crestfallen look on the sonographer’s face. She said: “He just said ‘I’m so sorry would you like some time to yourself’. It just took me ages to understand that he meant that the pregnancy wasn’t going to work and then he left me in the room with Justin and it just kind of sunk in that actually that excitement was just for nothing.”
The devastating news floored Natasha, who had longed so much for a baby. She said: “Just that sense of being a barren woman.That’s what haunted me, that I was never going to be able to make him a father. It just broke my heart.”
Natasha was referred to the recurrent miscarriage clinic at Saint Mary’s Hospital in London. The 48-year-old went on to have two children, Arlo and Angelica. She said: “After all the sadness and the fear I just couldn’t believe that there had been this miracle. Any baby is a miracle anyway but for me it just felt like this was the most monumental miracle that these two babies were in our lives.”
Izzy Judd, musician and writer
Izzy and husband Harry, a drummer with McFly, started trying for a family three or four months after they got married. Izzy suffered with polycystic ovaries which make it difficult to conceive naturally, the couple decided to try IVF. After falling pregnant, their dreams were soon shattered. She explained: “It was Christmas Day night and I woke up it must have been about three-o’clock in the morning and there was just a really little bit of light coming through the curtains and I went to the loo and it was just like a horror scene just this bright red and the physical sensation of having a miscarriage of actually passing a baby even at seven weeks and three days it was. I’ll never forget that that physical feeling. It just fell and I just knew and I couldn’t look I just didn’t I just remember shouting to Harry it’s gone we’ve lost the baby.”
Izzy was devastated and the pain deepened when she saw families out with buggies or saw pictures of babies in magazines. She said: “You can’t help but feel responsibility you can’t help but think what if I can’t give Harry a family. What if I can’t give his mum and dad grandchildren. My parents randchildren.”
On her second IVF attempt in 2015 is he became pregnant again and gave birth to daughter Lola in January 2016. Izzy explained: “She was in my arms and it was just so ,surreal and magical and terrifying all at once.”
The couple went on to have a son kit in 2017.
- Miscarriage: Our Story will be broadcast on Channel 5 at 10pm on Thursday 15th October, and coincides with International Pregnancy and Infant Loss Remembrance Day.
- Miscarriage Association offers support and information to anyone affected by the loss of a baby in pregnancy. Call 0192 4200 799
On the 21st September was Chloe’s, my great niece, first birthday is heaven. Her life with my family was very short yet she is still very much alive which some people may think is a strange thing to write. We know we can’t physically have her with us but we don’t want to let the memory of Chloe to fade. Her brothers and cousins understand this, one of my nieces has told me that her middle daughter sometimes sings Twinkle, Twinle Little Star to Chloe which I think is amazing for such a young child.
‘Nanna’ (my sister) has a little ‘Chloe garden’ and the children like putting different things there. Katie and Mark, Chloe’s parents have a ‘Chloe shelf’ for stuff that family have bought which is perfect. We bought a bracelet for Katie and an angel with a yellow flower in it – they don’t expect it but it’s our way of showing love and that we also want to keep Chloe’s memory alive.
I know I can’t begin to understand what Katie is going through so I draw from my experience of forced adoption. It doesn’t even get anywhere near to her lose but I do understand losing my baby. I found him so at least I know he is alive,
It’s that time of year that is sad for our family. On my husband’s side it’s just been the 7th anniversary of a niece and nephew in law’s middle son being stillborn and later this month it will be the 1st anniversary of a niece and nephew in law’s second child’s, a daughter, death. Toby died by the 36 week of pregnancy but they chose to go full term so she could still pick up their eldest son. Chloe had Edward’s Syndrome / Trisomy 18 where only 5% of babies reach early adulthood. She survived a day but of course it doesn’t make it any easier for the family. Both are remembered with love and as a Christian I know they are both in heaven, both are healthy and both are happy.
As a Christian I can ‘say’ all the right things yet it still hurts and I understand why people don’t understand how a good, kind, loving God allows babies to die. My sister and I have talked about this – she isn’t a Christian – and I have been honest that I struggle trying to understand why God allows this. What I do know is He gives me the strength to do the best I can to be supportive even though I don’t understand what it’s like to lose a baby. The nearest I can to understanding is losing the battle to keep my son due to illegal adoption. My son is still alive but I didn’t ‘get’ my baby back, I found an adult.
Nobody can understand the profound loss of a baby unless they have been through it. Adoption is a limbo as the mother ‘loses’ her baby, it’s not common to get her baby back and at best she will know her child is alive. Anything more than that is a bonus.
What happens if your unborn baby dies – Stillbirth
Your baby’s wellbeing will be monitored during your antenatal appointments, so any problems will usually be picked up before labour starts.
Confirming the baby has died
If it’s suspected your baby may have died, a midwife or doctor might initially listen for the baby’s heartbeat with a handheld Doppler device. You’ll also be offered an ultrasound scan to check your baby’s heartbeat.
Sometimes a mother may still feel her baby moving after the death has been confirmed. This can happen when the mother changes position. In this case, the mother may be offered another ultrasound scan.
Finding out your baby has died is devastating. You should be offered support and have your options explained to you. If you’re alone in hospital, ask the staff to contact someone close to you to come in and be with you.
Before the birth, a person with skills and experience with parents who have lost a baby should be available to talk with you about whether you would like to see a photograph of your baby, have a memento such as a lock of hair, or see or hold your baby.
Giving birth if your baby has died
If a woman’s baby dies before labour starts, she will usually be offered medicine to help induce labour. This is safer for the mother than having a caesarean section.
If there’s no medical reason for the baby to be born straightaway, it may be possible to wait for labour to begin naturally. This decision doesn’t usually need to be made immediately, and it may be possible to go home for a day or two first.
In some cases, medicine that prepares a woman’s body for the induction process may be recommended. This medication can take up to 48 hours to work.
While waiting for labour to begin naturally, regular blood tests are needed after 48 hours.
Waiting for natural labour increases the chance of the baby deteriorating in the womb. This can affect how the baby looks when she or he is born and can make it more difficult to find out what caused the death.
If the health of the mother is at risk, labour is nearly always induced using medicine. This may be done immediately if:
- the mother has severe pre-eclampsia
- the mother has a serious infection
- the bag of water around the baby (the amniotic sac) has broken
Labour can be induced by inserting a pessary tablet or gel into the vagina, or by swallowing a tablet. Sometimes, medicine is given through a drip into a vein in the arm.
After the baby is stillborn
After a stillbirth, many parents want to see and hold their baby. It’s entirely up to you whether you wish to do so. You’ll be given some quiet time with your baby if this is what you want.
You can also take photographs of your baby and collect mementos, such as a lock of hair, foot prints or hand prints, or the blanket your baby was wrapped in at birth.
If you’re not sure whether you want to take any mementos of your baby home, it’s usually possible for them to be stored with your hospital records. If your hospital doesn’t keep paper records, you may be given these mementos in a sealed envelope to store at home. This means you’ll be able to look at them if you ever decide you want to.
You may also want to name your baby, but not everyone does this and it’s entirely your choice.
Decisions about what to do after a stillbirth are very personal, and there’s no right or wrong way to respond.
After a stillbirth, your body may start producing breast milk, which can cause discomfort and distress. Medicines (dopamine agonists) can stop your breasts producing milk. They cause few side effects and may also help you feel better emotionally, but they aren’t suitable if you have pre-eclampsia.
Some mothers prefer to let their milk supply dry up without medication. Your doctor or midwife can discuss your options with you.
Finding the cause
You’ll be offered tests to find the cause of the stillbirth. You don’t need to have these, but the results may help to avoid problems in any future pregnancies.
The tests you’re offered may include:
- blood tests – these can show whether the mother has pre-eclampsia, obstetric cholestasis or, rarely, diabetes
- specialist examination of the umbilical cord, membranes and placenta – the tissues that attach you to your baby and support your baby in pregnancy
- testing for infection – a sample of urine, blood or cells from the vagina or cervix (neck of the womb) can be tested
- thyroid function test – to see whether the mother has a condition that affects her thyroid gland
- genetic tests – usually carried out on a small sample of umbilical cord, to determine whether your baby had problems such as Down’s syndrome
More in-depth tests can also be carried out on your baby to try to establish the cause of death or whether there are any conditions that might have contributed to it. This is called a post-mortem.
A post-mortem is an examination of your baby’s body. The examination can provide more information about why your baby died, which may be particularly important if you plan to become pregnant in the future.
A post-mortem can’t go ahead without your written permission (consent), and you’ll be asked if you want your baby to have one. The procedure can involve examining your baby’s organs in detail, looking at blood and tissue samples, and carrying out genetic testing to see whether your baby had a genetic disease.
The healthcare professional asking for your permission should explain the different options to help you decide whether you want your baby to have a post-mortem.
You’ll usually have a follow-up appointment a few weeks after you leave hospital to check your health, and discuss the post-mortem and test results (if carried out).
This appointment is also an opportunity to talk with your doctor about possible future pregnancies. Before attending your follow-up appointment, you may find it helpful to write down any questions you have for your doctor.
A stillbirth can be emotionally traumatic for both parents, as well as for other family members. Help and support is available.
You may be introduced to a bereavement support officer or a bereavement midwife. They usually work in hospitals or for the local council. They can help with any paperwork that needs to be completed and explain choices you can make about your baby’s funeral. They’ll also act as a point of contact for other healthcare professionals.
Sands, the stillbirth and neonatal death charity, provides support for anyone affected by the death of a baby. You can:
- call the Sands confidential helpline on 020 7436 5881 – 9.30am to 5.30pm Monday to Friday, plus 6pm to 10pm Tuesday and Thursday
- email firstname.lastname@example.org
There are many other self-help groups in the UK for bereaved parents and their families. You can search for bereavement support services in your area.
These groups are usually run by healthcare professionals, such as baby-loss support workers or specialist midwives, and parents who have experienced stillbirth.
Some support groups are for women whose stillbirth has a specific cause. For example:
Edwards’ syndrome (trisomy 18)
Edwards’ syndrome, also known as trisomy 18, is a rare but serious condition.
Edwards’ syndrome affects how long a baby may survive. Sadly, most babies with Edwards’ syndrome will die before or shortly after being born.
A small number (about 13 in 100) babies born alive with Edwards’ syndrome will live past their 1st birthday.
Cause of Edwards’ syndrome
Each cell in your body usually contains 23 pairs of chromosomes, which carry the genes you inherit from your parents.
A baby with Edwards’ syndrome has 3 copies of chromosome number 18 instead of 2. This affects the way the baby grows and develops. Having 3 copies of chromosome 18 usually happens by chance, because of a change in the sperm or egg before a baby is conceived.
Your chance of having a baby with Edwards’ syndrome increases as you get older, but anyone can have a baby with Edwards’ syndrome. The condition does not usually run in families and is not caused by anything the parents have or have not done.
Speak to a GP if you want to find out more. They may be able to refer you to a genetic counsellor.
Types of Edwards’ syndrome
The symptoms, and how seriously your baby is affected, usually depend on whether they have full, mosaic, or partial Edwards’ syndrome.
Full Edwards’ syndrome
Most babies with Edwards’ syndrome have an extra chromosome 18 present in all cells. This is called full Edwards’ syndrome.
The effects of full Edward’s syndrome are often more severe. Sadly, most babies with this form will die before they are born.
Mosaic Edwards’ syndrome
A small number of babies with Edwards’ syndrome (about 1 in 20) have an extra chromosome 18 in just some cells. This is called mosaic Edwards’ syndrome (or sometimes mosaic trisomy 18).
This can lead to milder effects of the condition, depending on the number and type of cells that have the extra chromosome. Most babies with this type of Edward’s syndrome who are born alive will live for at least a year, and they may live to adulthood.
Partial Edwards’ syndrome
A very small number of babies with Edwards’ syndrome (about 1 in 100) have only a section of the extra chromosome 18 in their cells, rather than a whole extra chromosome 18. This is called partial Edwards’ syndrome (or sometimes partial trisomy 18).
This type of Edwards’ syndrome is more likely if 1 parent has a small change in their chromosomes. Blood samples are often requested from both parents to check for this and to help them understand the chance of it happening in future pregnancies.
How partial Edwards’ syndrome affects a baby depends on which part of chromosome 18 is present in their cells.
What it’s like to have Edwards’ syndrome
Edwards’ syndrome affects everyone differently.
All babies born with Edwards’ syndrome will have some level of learning disability.
They may also have a wide range of physical symptoms, which can be very serious. They may have heart, respiratory, kidney or gastrointestinal conditions.
Babies with Edwards’ syndrome will have a low birthweight.
Despite their complex needs, children with Edwards’ syndrome can slowly start to do more things.
Like everyone, children with Edwards’ syndrome have:
- their own personalities
- things they like and dislike
- things that make them who they are
Older children with Edwards’ syndrome will probably need to attend a specialist school.
Screening for Edwards’ syndrome
Women who are pregnant with 1 or 2 babies are offered screening for Edwards’ syndrome between 10 and 14 weeks of pregnancy. This looks at the chance of their baby or babies having the condition.
Read more about screening for Edwards’ syndrome at 10 to 14 weeks.
If it is not possible to measure the fluid at the back of your baby’s neck, or you are more than 14 weeks pregnant, you will be offered screening for Edwards’ syndrome as part of your 20-week scan. This is sometimes known as the mid-pregnancy scan. In is an ultrasound scan that looks at how your baby is growing.
Screening cannot identify which form of Edwards’ syndrome your baby may have, or how it will affect them.
Read more about the 20-week scan.
Diagnosing Edwards’ syndrome during pregnancy
If the combined test shows that you have a higher chance of having a baby with Edwards’ syndrome, you will be offered a test to find out for certain if your baby has the condition.
This diagnostic test involves analysing a sample of your baby’s cells to check if they have an extra copy of chromosome 18.
There are 2 different ways of getting this sample of cells:
- chorionic villus sampling, which collects a sample from the placenta
- amniocentesis, which collects a sample of the amniotic fluid from around your baby
These are invasive tests that increase your chance of having a miscarriage. Your doctor will discuss this with you.
Results from the diagnostic test
A specialist doctor (obstetrician) or midwife will explain what the screening results mean and talk to you about your options.
This is a very difficult situation and it is normal to feel a whole range of emotions. It may help to talk to your doctor, partner, family and friends about what you are thinking and how you are feeling.
If you are told your baby has Edwards’ syndrome, either before birth or afterwards, you’ll be offered support and information.
You can visit the SOFT UK website for support and more information on Edwards’ syndrome, and to contact other families affected by the condition.
You can also contact Antenatal Results and Choices (ARC), which has information about screening tests and how you might feel if you are told your baby does have, or might have, a problem.
ARC has a helpline that can be reached on 0845 077 2290, or 0207 713 7486 from a mobile, Monday to Friday, 10am to 5.30pm. The helpline is answered by trained staff, who can offer information and support.
Read more about what happens if antenatal screening tests find something.
Diagnosing Edwards’ syndrome after birth
If doctors believe your baby has Edwards’ syndrome after they are born, a blood sample will be taken to see if there are extra copies of chromosome 18.
Treating Edwards’ syndrome
There is no cure for Edwards’ syndrome and managing the symptoms can be challenging. You are likely to need help from a wide range of health professionals.
Treatment will focus on the symptoms of the condition, such as heart conditions, breathing difficulties and infections. Your baby may also need to be fed through a feeding tube, as they often have difficulty feeding.
Depending on your baby’s specific symptoms, they may need specialist care in hospital or a hospice, or you may be able to look after them at home with appropriate support.
Advice for carers
Caring for a baby or child with Edwards’ syndrome can be very challenging. There is lots of support available to help you.
Your guide to social care and support provides lots of advice on how you can take time to look after yourself, including:
- keeping fit and healthy
- getting a break from caring
- getting legal support and advocacy
- taking care of your wellbeing
Information about your baby
If your baby is found to have Edwards’ syndrome before or after their birth, their clinical team will pass the information about them to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS).
This helps scientists look for better ways to treat the symptoms of the condition. You can opt out of the register at any time.
It took Irish woman 48 years to learn that she was illegally adopted, although she always felt she ‘didn’t belong’ to her family
Sat 2 Jun 2018 07.00 BST
She was two days old and in “good condition” when a couple knocked on the door of a house in Collins Avenue, Dublin. It was 1954, a time when Ireland was ruled from the pulpit and unmarried pregnant women were told they were a shameful stain on their families and communities.
As the woman picked up the newborn, Nurse Doody a well-known midwife in the city said they should leave by the side door, out of sight of the baby’s birth mother. The couple and Doody took the infant straight to Our Lady of Consolation church in Donnycarney, where the local priest baptised her Theresa Marion Hiney.
Six weeks later, the birth was registered; the certificate records that she was born at home to James and Catherine (known as Kathleen) Hiney. A caution is printed along the bottom: “To alter this certificate or use it as altered is a serious offence.” There is no warning about giving false information in the first place.
It took another 48 years for Theresa Hiney Tinggal to learn that she was illegally adopted, although she had always felt she “didn’t belong” to her family and she never got on with her mother. And it took a further 15 years, until last April, to track down her biological family in Tipperary. She learned that her birth mother was dead and the man who was probably her biological father had long since emigrated to Canada.
Now almost 64, Tinggal is reconciled to the past, although the decades of betrayal and lies still hurt. But, she said, her case and the cases of another 125 people, to whom Leo Varadkar apologised this week for their illegal adoptions, were “just the tip of the iceberg”.
The taoiseach told the Irish parliament that the 126 illegal adoptions through the Catholic agency St Patrick’s Guild between 1946 and 1969 were “another chapter from the very dark history of our country”. People had been robbed of their identity, and many still had no idea they had been adopted decades ago. The revelation would be traumatic. “I am so sorry,” he said.
Tinggal, whose adoption was not through St Patrick’s Guild, told the Guardian: “The number is a joke. I’d add at least a couple of zeros to that. There are thousands of us. It’s hard to put a figure on it and the government knows that.”
She added: “Those people will like me be completely shocked. They could spiral into depression, and will need support and counselling.”
Tinggal discovered the truth about her past from an uncle, who blurted out the information in a phone call. “He said, ‘I really don’t know how they did it, Theresa, but I went home [to Ireland], you were a baby there, and your father said to me, yeah, we got Theresa but not in the legal way.’”
Moments after that call, Tinggal’s older sister who had always known the truth confirmed the devastating news. She flew to Dublin to confront her mother, who confessed the whole story and signed an account of it before she died last year.
In it, Kathleen Hiney tells how she and her husband longed for a second child but were unable to conceive. By chance, her husband met an acquaintance who said he and his wife had adopted a girl but outside any official process. The man offered to put the Hineys in contact with someone who could help them.
Soon after Tinggal’s birth, the couple were informed by telegram and set off to collect the baby. She was on the floor “in an orange box, wrapped in cotton wool” says Kathleen’s account. Kathleen was told nothing about the birth mother’s background. “There did not seem to be any legal process, I did not sign or was not informed about anything and I didn’t ask.”
When she registered the baby’s birth, “they didn’t ask anything, I just said she had been born at home”.
But two years later, Kathleen admitted the illicit adoption to the health board, through which she fostered a third child. Without knowing it, Tinggal was monitored on a monthly basis by health visitors until she was 16, with notes on her progress recorded in a thick file. All the time, she believed the health board visits to the family home were to check on her fostered younger sister.
“They knew my adoption was illegal, but they didn’t do anything. I think I was just one of many thousands of illegitimate children who had been illegally adopted but as I had a home I think they just saw it as a problem solved,” she said.
As well as the health board file, a register of births about 1,000 were found among Doody’s papers after her death. Tinggal’s birth, with her “good condition” noted, were among them. It was also recorded that £45 a considerable sum in 1954 had been handed to Kathleen, probably to pay for a pram and other essentials.
For a while after Tinggal discovered that she had been illegally adopted, “I was so angry you wouldn’t believe it. I fought with everybody. Friends said, ‘you’ve changed since you found out you were adopted.’ I said, ‘what do you expect? I’m not the person I thought I was.’”
She traced her biological relatives through DNA matching, a long and often disheartening process. “I used to look in the mirror and shop windows and wonder who I looked like,” she said. “Now I know who I am and where I come from.” She visited her birth mother’s grave. “My heart still feels for her and all of the mothers in her situation,” she said.
Ten years ago, Tinggal who now lives near Bournemouth set up Adopted Illegally Ireland, which campaigns for adoptees to be given access to files and records. The organisation claims 42 mother and baby homes were involved in informal or illegal adoptions.
The adoption industry in Ireland spun out of control, she said, because of “the Catholic church and the idea of sin well, a sin for women but all those men got away with it. Now the church has lost control, which is the best thing ever for that country. They’ve destroyed so many lives.”
Varadkar’s apology this week was, she said, “a significant moment. But why have they put a lid on it all these years? Why didn’t they listen? I’ve been raising it for years and in the end I thought, I’m up against a brick wall here.”
She and other adoptees did not want compensation or retribution, but they wanted help in finding the truth. “Everyone I’ve spoken to over the years just wants to know where they come from and what happened. I don’t think this can be swept under the carpet again. Things will change now, and not before time.”
Children who kill from shootings to stranglings, 12 evil kids and how they took another young life
Joshua Phillips was 14 when he murdered an eight year old and hid her body for six days, Jon Venables and Robert Thompson were 10 when they killed two-year-old James Bulger and Morgan Leppert was 15 when she killed a pensioner.
- 15:37, 22 FEB 2019
- Updated15:47, 22 FEB 2019
It’s rare for a child to commit a serious crime, and even rarer for that act to be murder. So when these cases make the news, they fascinate readers and stay in the public consciousness long after the trials have ended. Murder is such an extreme crime that even what motivates adult killers can remain mysterious. Getting to the bottom of what pushed a child to kill is even more difficult. Many such crimes involve children attacking those younger than them, usually with an age gap of six to eight years. Needing to feel powerful comes into some of the cases, as does curiosity wanting to know what killing feels like. Below, we take a closer look at some of the most chilling child murderers:
1. Aaron Campbell
Evil Campbell snatched six-year-old Alesha MacPhail from her bed as she visited her dad and grandparents on the Isle of Bute, Scotland, last July. The 16-year-old abducted, raped and murdered the 3ft 9ins youngster, causing “catastrophic” injuries, before dumping her body in woodland on the island. Alesha, a “smiley” little girl who was adored by her family, was later discovered facedown and naked at the site by a member of the public. A court heard she had 117 separate injuries. Campbell, who lived on the scenic and sparsely populated island, was yesterday found guilty of her abduction, rape, and murder by jurors. Judge Lord Matthews told the teenager he had committed some of the “wickedest, most evil crimes” Glasgow’s High Court had ever heard. He was found guilty of the horrific crime on February 21.
2. Danny and Ricky Preddie, 13 and 12 (2000)
Only after a third trial were teenage brothers Danny and Ricky Preddie jailed for killing 10-year-old Damilola Taylor. The young boy was walking home from Peckham Library in south-east London on a November day in 2000, when he received a gash to his left thigh from a broken bottle, as caught on CCTV. Star Wars actor John Boyega and his sister Grace were some of the last people to be spotted on the CCTV footage with Damilola while escorting his part of the way home. The three were friends and the Boyegas helped watch him. Damilola ran to a stairwell and bled to death in 30 minutes in the grim surroundings. Several theories around what caused his fatal wound were presented by forensic scientists in court, with the Metropolitan Police accepting that he was attacked and fell onto a broken bottle. The first trial led to acquittals after the key witness a 14-year-old girl was ruled unreliable by the judge. The jury in the second trial could not reach a verdict on the charges of manslaughter. At the end of the third trial, the two brothers by now over 18 years old were sentenced to eight years in youth custody. Ricky was released in 2010, and Danny followed the next year. Damilola’s story was made into a 2016 BBC drama, Our Loved Boy.
3. Eric Smith, 12 (1993)
While riding his bike through a local park in Steuben County, New York, 13-year-old Eric Smith bumped into four-year-old Derrick Robie who was walking alone. Smith lured the small boy into a wooded area, strangled him, dropped two large rocks on his head, and then sodomized the body with a tree limb. He was eventually convicted of second-degree murder and sentenced to the maximum term then available for juvenile murderers: a minimum of nine years to life in prison. He has been refused parole eight times since 2001, and will next be up in 2018. In 2005, Smith claimed that his family life was abusive, and the effect upon him was as devastating as the bullying. However, his inability to express emotion while saying such words leads court psychologists to believe that Eric Smith could ever be fully rehabilitated and released into society.
4. Lionel Tate, 12 (1999)
Lionel Tate is the youngest American citizen ever to be sentenced to life in prison without the possibility of parole. Tate was left alone with six-year-old Tiffany Eunick, who was being babysat by his mother, Kathleen Grossett-Tate. After 45 minutes of playing with the little girl, Tate told his mum that she wasn’t breathing, because he’s had her in a headlock and slammed her head on the table. In fact, her injuries ranged from a lacerated liver to a fractured skull, broken rib, and swollen brain – the prosecution said her injuries were consistent with those she would have sustained falling three stories to the ground. Tate had stomped on the little girl until she succumbed to her injuries. His life sentence was extremely controversial as he was so young to receive such a long sentence. The prosecution even joined the plea for leniency in sentencing and offered to help with Tate’s appeal. The conviction was overturned in 2004 on the basis that his mental competency had not been completely evaluated before the trial. He was released on one year’s house arrest and 10 years’ probation. He has committed further crimes since and is currently serving 10 years in prison. He is due for release in 2018.
5. Joshua Phillips, 14 (1998)
Joshua Phillips was allegedly playing with a baseball bat at home in Jacksonville, Florida, when he struck 8-year-old Maddie Clifton in the eye, causing it to bleed. Phillips claimed he panicked, fearing his father’s reaction, so he strangled her with a phone cord and stabbed her 11 times. He then hid her body in the pedestal of his waterbed, where his mother discovered it a week later. While the autopsy did not reveal any sexual assault, Maddie’s body was found nude from the waist down. The murder appears to have been motivated by Phillips’s fear of his abusive father, who would have been very angry had he found Maddie hurt at their house. Phillips, who had no history of violence, was charged as an adult with murder. He was found guilty of murder in the first degree, and sentenced to life without possibility of parole.
6. Craig Price, 15 (1989)
Craig Price had become a serial killer before the age of 16, having killed four people in his Rhode Island neighbourhood on the east coast of the US. Aged 13, in 1987, Price broke into the house two doors down from his own and stabbed 27-year-old Rebecca Spencer 58 times, killing her. He did not become a suspect in that case until confessing to the murder two years later after he went on to kill three other neighbours, while he was high on marijuana and LSD. The victims, 39-year-old Joan Heaton and her daughters Jennifer, 10, and Melissa, 8, were stabbed over 30 times each. Their wounds were so deep that the handles broke off the knives, leaving the blades embedded in the victims. In court, Price nonchalantly mimicked the dying cries of the Heaton girls, displaying no emotion even as he related such grim details as biting the face of one of the victims as he stabbed her. Price refused a court order to undergo further psychological testing, fearing the results would be used to commit him for life. Instead, he was jailed for 25 years, but his violent behaviour behind bars makes it unlikely he will ever be released.
7. Alyssa Bustamante, 15 (2009)
Alyssa Bustamante lured her 9-year-old neighbour Elizabeth Olten into the woods, where she strangled her, then slit her neck and wrists, before burying her in a shallow grave. Bustamante, of midwestern state Missouri, was a troubled teenager who had a history of depression, self-harm, and suicide attempts. “I just f***ing killed someone. I strangled them and slit their throat and stabbed them now they’re dead. I don’t know how to feel atm [at the moment],” Bustamante wrote in her diary.
She later added: “It was ahmazing. As soon as you get over the ‘ohmygawd I can’t do this’ feeling, it’s pretty enjoyable. I’m kinda nervous and shaky though right now. Kay, I gotta go to church now lol.”
Elizabeth’s mother, Patty Preiss called Bustamante “an evil monster” and said that she “hated her” on the first day of the teenager’s sentencing hearing. Alyssa was charged with first-degree murder and tried as an adult, getting a life sentence with the possibility of parole.
9. Jesse Pomeroy, 11 (1871)
The son of a Civil War veteran, Jesse Pomeroy was born in Boston in 1859. By the age of 11, he had begun luring younger boys to remote areas and beaten them with extreme brutality, using fists, a belt, and a knife. In 1872, he was finally arrested for the ongoing attacks and sentenced to reform school. The Boston Globe covered the story, and the last line of the article said: “It is generally concluded that the boy is mentally deficient.”
In 1874, Pomeroy was living back with his family, and attacked 10-year-old Mary Curran, then later, four-year-old Horace Mullin. He killed both youngsters, and their bodies were later found hidden in the basement of the house. They had been slashed, stabbed, and decapitated with a knife. Pomeroy was found guilty of murder in the first degree and sentenced to death by hanging. However, two years later, in 1876, his sentence was commuted to life in solitary.
9. Morgan Leppert, 15, (2009)
Leppert and her 22-year-old boyfriend at the time Toby Lee Lowry was convicted of the brutal murder of James Stewart, 62, in his own Florida home. Stewart was found lying on the floor of his Florida after being stabbed multiple times with metal rods and a knife and suffocated with a plastic bag over his head. In the police tapes, she told detectives: “[My boyfriend] told me to stab him. I poked him, it didn’t even go through for god’s sake.”
She places most of the blame with her ex-boyfriend, who testified against her in order to avoid the death penalty. The pair claimed that they killed Stewart to steal his car.
10. Willie Bosket, 15 (1978)
Willie Bosket was born in Harlem, New York to a father who killed two people shortly after his son was conceived, and thereafter spent his life in prison. Bosket junior was in and out of trouble growing up, a violent child, and wore this as a badge of honour, telling juvenile authorities that he would be a killer just like his father. He committed his first murder when he was 15-years-old, shooting and killing two men during separate robbery attempts. He also killed a transport worker before the police got to him. He was tried as a minor and was given 5 years in a youth facility a sentence seen as extremely light. The outcry against his sentence let to the Juvenile Offender Act of 1978, which ruled that children as young as 13 could be tried in New York’s adult courts for crimes as serious as murder and receive the same penalties as adults. Upon release aged 20, Bosket continued his life of crime, leaving and re-entering jail until receiving a life sentence for assault and arson while in prison in 1989.
11. Mary Bell, 11 (1968)
On the day before her 11th birthday, Mary Bell lured 4-year-old Martin Brown to an abandoned house in Newcastle, north-east England. Two months later, she strangled 3-year-old Brian Howe to death. The story of Bell’s childhood is particularly brutal. Her mother Betty was a prostitute who had tried to kill her daughter on more than one occasion, trying to make it look like an accident. On one such occasion, an independent witness saw Betty giving the pills to her daughter as sweets. Mary herself says she was subjected to repeated sexual abuse, her mother forcing her from the age of four to engage in sexual acts with men. During her trial, court-appointed psychiatrists said Bell displayed classic signs of psychopathy. The judge described her as dangerous and still posing a risk to children. After serving her 12-year sentence, Bell was released in 1980, and has lived under a series of pseudonyms since, which have been extended to cover the daughter she had aged 27.
12. Jon Venables and Robert Thompson, both 10 (1993)
Jon Venables and Robert Thompson became the youngest convicted murderers in England after killing 2-year-old James Bulger in 1993. They abducted the toddler from a shopping centre in Bootle, Merseyside, and took him to a disused railway line, where they began torturing him. They threw paint in his eye, kicked and stomped on him, threw bricks and stones at him, then dropped a 10kg iron plate on him. The case pathologist said that there were so many injuries 42 in total that not one could be isolated as causing the fatal injury. The boys left Bulger laid across the railway tracks with his head weighed down. After they left the scene, his body was cut in half by a train. A pathologist confirmed that the little boy had died before the train hit him. After trial and conviction, the now 11-year-old boys were sentenced to serve 15 years. The huge media interest in the trial as well as their young ages led to numerous reviews of their sentence, going all the way up to the European Court of Human Rights. The boys were released from prison on licence in 2001, aged 18, with new identities to protect them for life. Jon Venables has been in and out of prison since, on charges including accessing child pornography.
Children Who Kill with Susanna Reid ITV 9pm tonight (Thu)
Family’s 18 months of hell after two children are taken away when blundering social workers wrongly accuse them of breaking baby’s limbs
Family’s 18 months of hell after two children are taken away when blundering social workers wrongly accuse them of breaking baby’s limbs
- Social workers accuse mother of harming her newborn son
- Children taken into foster care despite any wrongdoing
- Case dropped after doctors diagnose boy with brittle bone disorder
By Luke Salkeld for the Daily Mail
Updated: 10:56, 17 August 2011
A couple was accused of child abuse after doctors failed to realise their baby son’s ‘injuries’ were caused by genetic bone disease. Both parents were arrested and prevented from seeing their children unsupervised for 18 months before their innocence was finally acknowledged. Yesterday Amy Garland said she and her partner had been treated like criminals after they took their six-week-old son Harrison to the hospital when he was ill. Miss Garland and her partner Paul Crummey were arrested and banned from seeing their children alone before anyone realised that Harrison actually had the brittle bone disease or osteogenesis imperfecta. The rare condition is caused by a gene defect that impairs the production of the protein collagen, making bones fragile. Those with the disease can break their bones while being cuddled or even in their sleep. Around 40 to 60 babies are born with the disorder each year. Miss Garland, 26, who lives near Bristol, said her family had been left in tatters after she and Mr. Crummey split up over the stress caused by being separated from their children. As soon as the fractures were discovered, social services were called in. The couple could not explain the apparent injuries and police arrested them. Their daughter Bethany, then 20 months, was placed in the care of Miss Garland’s father. When the case went before Bristol County Court a judge ordered them to live in a family placement centre where their every move was observed. Miss Garland said: ‘The judge didn’t want to separate me from Harrison because I was still breastfeeding. We were watched 24 hours a day and there were cameras in every room. It was like a prison.’
After three months, staff could find nothing wrong with their parenting skills and recommended that the family be allowed to stay together. But social workers applied for an interim care order and the children were placed into foster care with Miss Garland’s mother. They were allowed contact with their parents for six hours a day, under supervision. This continued for more than a year until Miss Garland found an expert who said Harrison probably had osteogenesis imperfecta. Six months later, doctors agreed that this was a possibility and South Gloucestershire Social Services dropped the case. Miss Garland told last night how Harrison had been in obvi s discomfort in the weeks after his birth, but hospital tests found nothing. But when she got home she noticed his legs were swollen, and X-rays later showed he had several fractures in his arm, feet, and legs. Miss Garland said: ‘We had no idea that this condition was in our family so when they asked us how they happened we didn’t know. They said they needed to investigate it and we were happy for them to do that. The police and social services asked us a lot of questions. They asked me if there was any family history of violence. The police spoke to our neighbours asking what we were like. They went through our house. I was in absolute shock. I felt like a criminal.’
Even in hospital, she was not allowed to be alone with her son. ‘I wasn’t eating and I couldn’t sleep because I was worried they would take him from me,’ she said.
The strain caused the couple to split up two months after the children went into foster care. Miss Garland said: ‘It was horrible. When I went home at night and the kids weren’t there, I broke down. We took things out on each other.’
A month after the case was finally dropped two years ago, Harrison was officially diagnosed with osteogenesis imperfecta. Bethany, now five, was found to have a lesser type of condition. Harrison still has vitamin D injections to strengthen his bones and sees a physiotherapist to build up his muscles. Brittle bone disease is often confused with osteoporosis thinning bones in women after menopause but the two are not the same. Mr. Crummey, 41, who recently lost his job as a civil servant at the Ministry of Defence, said: ‘All we wanted to do was help our sick child but we were treated like criminals. We’ve never received an apology from social services. It makes me feel very angry.’
A spokesman for South Gloucestershire Council said: ‘We have a legal duty to protect children and young people and we always put the welfare of the child at the heart of how we deliver our services.’
WHAT IS OSTEOGENESIS IMPERFECTA?
Osteogenesis imperfecta (OI), also referred to as brittle bone disease, is a genetic disorder where infants are born with defect connective tissues leaving their bones susceptible to tear. A person born with such a defect can remain troubled by this throughout his or her life. In addition to fractures people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), and short stature.
We have been in lockdown for three months although it is slowly easing up. Pubs will be opening up but gyms aren’t or nail bars as examples and it doesn’t make any sense. People can get drunk and forget about social distancing which scares me even though we don’t go to pubs much. I’m looking forward to going out for a meal occasionally but it worries me for that reason – some people drinking too much. I would prefer to go to the health club but the reason why health clubs, leisure clubs and gyms won’t open yet is based on the grounds that when people sweat droplets can be passed on. So why is going to the pub any better when people get relaxed?
I can understand why people are splitting up and domestic violence are on the increase. We have suffered even more with depression as we haven’t been able to go out to places we like. My sister and brother-in-law celebrated their 40th wedding anniversary in May but we couldn’t go due to the distance and social distancing. Their daughters and families went round but had to sit outside. One of their daughters and son-in-law’s neighbour had a party and someone reported them to the police so the party was stopped. My sister was worried that the same would happen to them but they managed to celebrate without being reported.
Her youngest daughter had her third daughter on the 29th of April which was hard for all of the family because they couldn’t visit properly. My niece’s mother-in-law works in a doctor’s surgery so she hasn’t been able to visit or have cuddles which is very sad. My sister was able to go round on the 30th of April with clearance from the midwife so I’m pleased for her. I’m looking forward to visiting and was pleasantly surprised that her mother-in-law said it would be nice to meet up – we are friends on Facebook.
To make life difficult for us even more is a neighbour who has taken a dislike to us. He came out one day having a go at us about our ten cats using his garden to do their business. We don’t have ten cats, one of our cats spend quite a bit of time over the road with her sister and comes over to us to eat. One of our cats has a hiding place which we haven’t discovered yet and comes in to eat. Our other two (four cats in other words) spend time in our shed, indoors or over the road with our other cats. The neighbour has threatened to let his dogs out if he sees ‘our cats’ in his garden. He has been warned if anything happens to any cats in the area he will get the blame due to the threats. Fortunately we have a good enforcement officer in our housing association.
The neighbour made a couple of other accusations, one of which is that my husband is a wife beater. That just made me laugh. We are both quite loud when we argue but once an argument is over and done with that’s it. However, my balance has been getting progressively worse over the years so I do fall regularly so I will shout out for help. We also had a rescued staffie who was beautiful and gentle but in recent months she didn’t like us going out even to walk her and our other dog. She would turm from a placid dog to an aggressive, barking dog. She became worse and worse for getting aggressive towards her playmate and we would intervene. In the end we couldn’t cope anymore and she was sadly put to sleep. The vet was very understanding and knew we didn’t want her to potentially hurt anyone else or put her back into kennels. She had been in kennels for most of her first four years then we had her for three years so she knew she was well loved to the point of being spoilt. Going to bed is still hard as she used to sleep under my knees.
My niece and nephew-in-law went through with the devastion of their second child, a daughter, having Trisomy 18. She lived for a day and looked perfect but it doesn’t take away the pain they live with.
“Is she in pain?” I asked quietly as the pearlescent baby-shaped image on the screen folded its legs and then extended them.
The radiologist doing my ultrasound had just finished pointing out a cluster of alarming abnormalities in our developing daughter, using a slew of medical terms my husband and I, both medical students, were grimly familiar with. Pleural effusion: fluid surrounding one of her lungs, preventing it from expanding and developing properly. Ascites: excess fluid inside the abdomen, surrounding her organs. Cystic hygroma: a large, fluid-filled mass on her neck, strongly associated with chromosomal abnormalities. Something was very wrong with our baby.
A few hours later, I lay on a hospital exam table. Arms folded over my head, I tried to stay still as a specialist in maternal/fetal medicine used a large needle to pierce my abdominal wall and then my uterus in order to take a sample of the placenta for genetic testing. After an agonizing two weeks, the results came back: our daughter had trisomy 18. My husband and I immediately understood the gravity of this diagnosis it is one of those rare conditions we expected to encounter on a medical board exam, not in real life.
Trisomy 18 is rare, occurring in about 1 in 2,500 pregnancies. The cells of these babies have three copies of chromosome 18 instead of the usual two. There is no cure. Most babies with trisomy 18 die before they are born. The majority of those who make it to term die within five to 15 days, usually due to severe heart and lung defects. The few who live past one year have serious health problems, such as a toddler lacking abdominal wall muscles, revealing the slithering movement of intestines beneath his skin, or a 1-year-old who cannot not defecate on her own, requiring anal sphincter dilation multiple times each day.
In rare cases, babies with trisomy 18 are mosaic, meaning only some cells possess the harmful extra chromosome, which makes the disease less severe. Our daughter was not mosaic.
As parents, we felt it was our duty to protect our daughter from the inevitable suffering she would meet if she were to make it to term. And so, at 15 weeks of gestation, we made the painful decision to end our very wanted pregnancy.
As the date approached, I wore bulky clothing in an effort to hide my protruding belly I was terrified someone would congratulate me on my pregnancy. Each day, I hoped that our daughter had not developed sufficient neural connections to begin sensing that her organs were failing. Using our home Doppler monitor, a Christmas gift from my sister, we listened to her heartbeat. Two days later, I tried to hear her heartbeat again, but it was no longer there. She had already died.
When I woke up from the dilation and evacuation procedure, during which her remains were removed from my body, I cried. I had never felt such profound emptiness.
My husband and I were given a small box sealed with a bow. It contained a tiny baby’s hat and a thick piece of paper marked with purple footprints the size of my thumbnail. Her footprints.
We had her remains cremated and placed her ashes in a tiny white urn small enough to fit in the palm of my hand. It felt good to have her home, even if it wasn’t in the way we had expected.
For such a heartbreaking event, we had the best-case scenario. My husband and I are medically literate. Our medical costs were fully covered by my insurance. I received care at one of the best hospitals in the country. We received superior counseling from multiple physicians and a genetics counselor, who helped inform us and support us without dictating or judging our decision. The day of my surgery, I was treated like any other surgical patient.
Other families aren’t as lucky as mine. A few months after my loss, my friend Jamie ended her pregnancy due to trisomy 18. I was horrified and saddened by her description of her experience.
As a Missouri resident, Jamie’s insurance did not cover pregnancy termination in the case of severe fetal impairment. Because their local hospital was charging them $8,000 for the procedure, Jamie and her husband, cash-poor from a recent home purchase, opted to drive to an abortion clinic. Protesters shouted at them as they entered the clinic: “Why would you want to hurt daddy’s little girl? That’s daddy’s little girl you’re killing!”
Once inside the facility, Jamie had an ultrasound to confirm the cost of the procedure, which would be based on the baby’s gestational age. She and her husband were informed that the procedure would cost an extra $100 boosting the cost to $800 because the center’s clinicians disagreed with the gestational age that Jamie and her husband had reported. The clinic asserted that the baby was a bit older, making the procedure more costly. Jamie and her husband found themselves in the twisted position of having to haggle the cost of their own nightmare.
Eventually, Jamie underwent the procedure. Feet in stirrups, she received a “comfort shot” an extra $60 which I later learned meant an injection of fentanyl, a powerful narcotic. She was vaguely awake throughout the procedure and has spent the months since actively suppressing the dim, distressing memories of the termination.
After it was over, Jamie and her husband were not able to obtain the remains of their baby, nor were the remains sent for genetic analysis to determine whether their child’s form of trisomy 18 was heritable or not, as my husband and I had learned from genetic analysis. The center did not send a pathology report to Jamie’s obstetrician until many weeks later, and only after she phoned the center multiple times.
According to the Guttmacher Institute, 26 states prohibit abortion coverage in Affordable Care Act marketplace plans, and 11 states extend these restrictions to private insurance companies, effectively eviscerating Roe v. Wade. Only one of these states (Utah) makes an exception in the case of severe fetal impairment. In these states, only the wealthiest have access to pregnancy termination.
Social media urged to take ‘moment to reflect’ after girl’s death
Children’s Commissioner for England writes open letter highlighting ‘horrific’ content
Richard Adams Education editor
Wed 30 Jan 2019 00.00 GMT
The children’s commissioner for England has accused social media companies such as Facebook and Snapchat of losing control of the content carried on their platforms, telling them that recent teen suicides should be a “moment of reflection” for the way they operate. In an open letter to Facebook, Instagram, WhatsApp, YouTube, Pinterest and Snapchat, Anne Longfield said the suicide of 14-year-old Molly Russell has highlighted the “horrific” material that children were able to easily access online. “The recent tragic cases of young people who had accessed and drawn from sites that post deeply troubling content around suicide and self-harm, and who in the end took their own lives, should be a moment of reflection,” Longfield told the companies.
“I would appeal to you to accept there are problems and to commit to tackling them or admit publicly that you are unable to.”
Molly’s father Ian has said that social media was partly to blame for his daughter’s death, after her Instagram account was found to contain distressing material about depression and suicide. “The potential disruption to all user experiences should no longer be a brake on making the safety and wellbeing of young people a top priority. Neither should hiding behind servers and apparatus in other jurisdictions be an acceptable way of avoiding responsibility,” Longfield added.
Longfield reiterated her call for an independent “digital ombudsman” to ensure that the companies protect young children and speed up the removal of disturbing material. “I do not think it is going too far to question whether even you, the owners, any longer have any control over their content,” Longfield wrote.
“If that is the case, then children should not be accessing your services at all, and parents should be aware that the idea of any authority overseeing algorithms and content is a mirage.”
A spokesperson for Facebook, which also owns Instagram and WhatsApp, said: “We have a huge responsibility to make sure young people are safe on our platforms and working together with the government, the children’s commissioner and other companies are the only way to make sure we get this right. Our thoughts are with Molly’s family and with the other families who have been affected by suicide or self-harm. We are undertaking a full review of our policies, enforcement, and technologies and are consulting further with mental health experts to understand what more we can do.”
Longfield’s letter included questions that she wanted to be answered by the companies, including how many self-harm sites or postings are hosted on their platforms, and how many are accessed by users under the age of 18. The companies were also asked to reveal the results of their own research into the impact of self-harm sites on children’s mental health, and what support options are offered to users searching for images of self-harm. “It is your responsibility to support measures that give children the information and tools they need growing up in this digital world or to admit that you cannot control what anyone sees on your platforms,” Longfield told the companies.
The intervention comes after Ofcom this week said the proportion of 12- to 15-year-olds who reported being bullied over social media rose from 6% in 2016 to 11% last year. Snapchat said its public content was moderated and “highly curated”, using only content from leading media companies and celebrities, and collected from other users by its in-house news team or professional partners. “We work hard to keep Snapchat a safe and supportive place for everyone. From the outset we have sought to connect our community with content that is authoritative and credible and safeguard against harmful content and disinformation,” said a spokesperson.
In the UK, Samaritans can be contacted on 116 123 or email email@example.com. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.