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Sadness

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.

https://www.nhs.uk/conditions/stillbirth/what-happens/

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.

Natural labour

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. 

Induced labour

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.

Breast milk

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.

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.

Follow-up care

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.

Bereavement support

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.

Many people experience feelings of guilt or anxiety following the loss of their baby. Some parents experience depression or post-traumatic stress disorder (PTSD).

You may find it helpful to discuss your feelings with your GP, community midwife or health visitor, or other parents who have lost a baby. Read more about bereavement and dealing with loss.

Support groups

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 helpline@uk-sands.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:

https://www.nhs.uk/conditions/edwards-syndrome/

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.

This screening test is called the combined test and it works out the chance of a baby having Edwards’ syndrome, Down’s syndrome and Patau’s syndrome.

During the test you will have a blood test and an ultrasound scan to measure the fluid at the back of your baby’s neck (nuchal translucency).

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:

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.

Edwards’ syndrome has an impact on your baby’s movements as they get older, and they may benefit from supportive treatment such as physiotherapy and occupational therapy.

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.

Our child received a devastating diagnosis before she was born. We decided to protect her

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.

By Allison Chang
January 7, 2019

“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.