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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.

Social media urged to take ‘moment to reflect’ after girl’s death

https://www.theguardian.com/media/2019/jan/30/social-media-urged-to-take-moment-to-reflect-after-girls-death

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 jo@samaritans.org. 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.