Edwards Syndrome Awareness day
Today is Edward Syndrome awareness day. Today is about raising awareness of what Edward Syndrome is, celebrating children like Evangeline and changing the narrative of Edwards Syndrome being "Fatal" and children with Edwards Syndrome being "incompatible with life." It is also about fighting for equal rights for children with this diagnosis.
Until October last year I had never heard of Trisomy 18/ Edwards Syndrome. Now I'm part of an online community that shares their stories, shares medical tips, comforts each other after a loss, writes books, creates charities and offers hope to other parents who receive a diagnosis. Without this online community, I would have believed that a baby with Trisomy 18 can not survive. We were given outdated information by Wellington Hospital, that was literally written in the 80's we have come a long way in medical advancements since the 80's! Google is not much more hopeful. It was hard to hold out hope to meet Evangeline at all with the information I was told. The day we tested to find out what condition Evangeline had, a doctor told me "you may miscarry in the next few weeks, often people miscarry these babies, it's just "natures" way" She then proceeded to use the word miscarry several more times. I must have been too much in shock because it wasn't until later that I realized how unempathetic and devaluing of our baby her comments were.
When you find out your baby has a diagnosis like this you are told outdated statistics like "95% of babies won't live beyond a year." The first thing we were offered was the option to terminate our baby. The baby I already loved and who I felt moving in my belly. The baby who had a consistent healthy heartbeat at every midwife appointment. You discover a world where people have to fight for their babies to live and some travel hours to receive medical care. You hear the stories of children who thrive and bring joy to their families and forever change their parents for the better. You learn that Trisomy 18 babies are in fact compatible with life even if their life is short or only exist in the womb. You learn the huge impact interventions makes for children with extra chromosomes. It breaks my heart to know that a baby is treated differently because of a diagnosis. I don't blame the doctors, I blame our outdated statistics and views. A NZ mum shared her story of not having a diagnosis for her child with full Trisomy 18 until after her baby was born and underwent life saving surgery. She was told if they had known her child had Edwards syndrome her daughter would not have been given surgery. That child is now 19 years old and a loved member of her family.
The most hurtful and hopeless conversation I had during my pregnancy was with a doctor who I was told was "pro life". I rang her to see if Auckland hospital could offer more for me than Tauranga was. Our conversation went something like this "Your babies heart condition is very severe and even if it wasn't she wouldn't be able to live beyond a year with full Trisomy 18" I said "actually there is a whole community of children with T18 living beyond a year." She said "that must only be children with Mosaic Trisomy 18, children with Full Trisomy 18 can't survive beyond a year" This is very far from the truth. This doctor was basically saying all the children on the Edward Syndrome page the SOFT page and Verity's Village who have full Trisomy 18, and have celebrated their 3rd, 5th, 7th 13th and beyond birthdays with T18 don't exist? The truth is there are many children and teens with Trisomy 18 who are happy and thriving. If you type in "Edward Syndrome" or "Trisomy 18" on Facebook or Instagram you will meet all these amazing children. However without intervention less than 1% live beyond a year but with intervention that increases by 33%.
New Zealand is a country where Trisomy 18 is believed to be fatal so surgeries are often not offered to babies with Trisomy 18. So in a NZ context that lady was probably pretty accurate. The only option that was offered to us and others in a similar situation to us was "comfort care". Which in our case, was nothing more than skin to skin. Don't get me wrong I'm grateful for every second that I held Evangeline but it was hard not to compare to Trisomy friendly hospitals in the US where babies are given oxygen and fought for in the NICU. I can't help but wonder, could we have had more time with Evangeline? I know that part of grief is wondering if there was more that I could have done. I also know I can't change what happened, but I can be a voice for others. I was told by the doctors here that babies with T18 are not offered surgeries because they most likely wont survive them. Again, I know of many children who have had surgeries, and are happy, loved members of their families. The latest case studies and research would suggest that most babies do survive surgeries and surgery is the difference between children dying in their first year of life VS living into their teens. As 90% of babies with Trisomy 18 have a heart condition.
I think its important to be balanced in what I am sharing because obviously Evangeline wasn't a baby who lived years. What we were told would most likely happen...did happen. Evangeline only lived a day. In the online community their are birthdays celebrated, and hospitals who fight for these children but also miscarriage's, and stillborn babies and those who die within hours, days weeks or months. Today on Edwards Syndrome awareness day, I wanted to share that Evangeline's story isn't the only story and wanted to advocate for equal rights. Not because I believe it would have changed the outcome for Evangeline. I know her heart condition was one of the worst a person can have, but I believe that it is not a one size fits all. Refusing to give any child with a T18, or T13 diagnosis or any other diagnosis surgery is not right. It is not equal care and equal rights.
There was a time where it was also believed that Down Syndrome children couldn't survive or needed to be killed abandoned or ostracized from society. Fortunately, we have come a long way for valuing the life of children with Down Syndrome, but not quite far enough. I recently learnt, that due to prenatal genetic testing, 100% of children with Down Syndrome are aborted every year in Iceland. This poses a major ethical dilemma when we start picking and choosing which kids should be born into society or not. As a Christian, I believe in the innate value of every human being. I believe we are all created in the image of God. I will always profess Evangeline's value and worth. She was loved, she was precious and she was worthy of life.
Experience of parents with T18
Interventions vs no interventions
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