When Caregivers Don't

Can we talk for a moment about how "pro-choice" often means its supporters are only "pro" the "choice" IF it's the choice to murder the child? For those of us carrying special needs children, the CHOICE to give that child life, even if that life doesn't "look" the way others think it should look, frequently is not a choice that is respected. In fact, it is fought against. Doctors often argue against carrying these babies to term. They resist parents' desires to be treated normally throughout the pregnancy and after delivery. They urge termination, and, failing to convince, wash their hands and instead refuse life-giving care measures, no matter how relatively insignificant.

If you don't believe me, take a look at some of these comments from parents on the Rare Trisomy Parents page on Facebook...

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We had known about these things [heart defects] for a few months. We delivered [Jan. 12, 2017] and they told us the next morning she also has T18. The doctors at [hospital name] denied us surgery and told us she would die. 

We are in Ohio and our hospital refused to do the repair for my daughter’s heart; she had a very large vsd, moderate ASD and a PDA. They were all repaired at [a different hospital].

My general OB scheduled my termination when he got the results of my amniocentesis before the news was transferred to me. Told me my daughter would end up being institutionalized if I kept her. Needless to say I switched practices and delivered her at 38 weeks. Evelyn Grace is full of Grace and thriving!

Doctors said some crazy things like "it won't be worth it to fix her heart because it won't change the outcome for her. She's going to die from something else." And a surgeon declined to perform her tracheotomy because he couldn't deal with the "ethical considerations of performing this type of invasive surgery on someone who can feel pain but will never be capable of emotional connection." She just turned 2.

FT 18…she's 4 months old. I was told to abort her numerous times and said she would never survive! I had to be induced at 42 weeks pregnant! I was told she would be a vegetable if she would survive. Lucy has congenital heart defects but with full intervention she is bringing her sunlight into this world and doing wonderfully.

When Penny was tentatively diagnosed via ultrasound, I was given the number of days I had to terminate before we'd even had the screening back to confirm.

I was told my Jett [Trisomy 8] would pass away in the womb or never make it through delivery. I was told he'd have an immense amount of deformities. I was encouraged to get a late term abortion when I was diagnosed with preeclampsia. My son lived seven beautiful days and his only "deformity" was a missing fingernail on his left pinky. He touched SO many lives in his short life. I would do it all over again. 

The only option [initially] given to us was to terminate our baby. We had our obstetrician appointment today….he said that I am likely to miscarry him anyway….he said he wouldn't think that any pediatrician would treat our son because of the T18. I just feel like everywhere I turn I'm confronted by the attitude that he is sub human & not worth fighting for. I have had the comments by loved ones of maybe that's why it's better to terminate so the baby doesn't suffer (not a valid argument & not mine or my husbands choice anyway) & "I don't want to hold a dead baby" when talking about family involvement when he's born.

This diagnosis is very difficult. We found out at 12 weeks and termination was pushed during the next 5 appointments. It wasn't until I was 5 months pregnant that actual support was offered to me.

My youngest is Jonas with a kind of PT18. We had big fights for him since doctors denied him treatment for a long time, and he had pain because doctors didn’t believe in him. Now he is 3.5 years old, and doctors have admitted they were totally wrong.

After the blood test, another ultra sound and an amino, it has been confirmed that my little girl is positive for T18. The genetic department, specialist and my OBGYN are all without any hope or support. I began researching online only to find that babies born with this are not automatically doomed. I have looked in my area for support and information only to come up empty. I am a single mother of four other children as well. I currently have only the state insurance and fear this will impact any medical help my daughter could otherwise have.

 I wasn’t given much hope either during my pregnancy. In fact my OB said it was better not to get my hopes up.

We were not given any hope; everything the dr told us was very negative. We left the hospital with hospice care after being in NICU for 2 weeks. Our daughter will be 4 yrs old in less than 20 days. She has continually proven everyone wrong and surprises us every day.

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The above comments are from families of living Trisomy children (mostly T18) and don't even reflect the countless stories of children who were given dire diagnoses during their mothers' pregnancy only to be born perfectly healthy. How many times have medical predictions turned out to be completely wrong?! Enough times that urging abortion at the first sign of impending "problems" is definitely out of line! Even when there ARE "problems," many special needs children are well loved, a joy and blessing to their families. It is an insult to them at the very least to say that abortion is the only answer in situations like these.

We have been blessed to have regular appointments with medical professionals who are kind, compassionate, and generally understanding of our desires to support Verity however we can--at least during pregnancy. Honestly, I am not entirely sure what will happen after she is born. We are making our intentions as clear as we can, but if we run into major issues and she needs significant support, I am not familiar enough with folks at the university medical center to know exactly what their responses will be. 

One of our many prayers for after Verity's delivery is that God will graciously make the hard decisions for us...that we won't be faced with having to decide about something that isn't clearly right vs. wrong. Our deepest desire is to bring Him glory in all things, and we pray daily that Verity will fulfill the purposes God has for her life, however short or long it is here on earth. And the last thing we want to do is muddle through murky territory trying to figure out how to help Verity physically and yet somehow unintentionally hurting her or causing other people who are following her story to miss seeing God's hand in everything that is happening.

But regardless of how the details of Verity's earthly life play out...the fact is, SHE IS ALIVE. Very much so, according to the movements in my belly! And she deserves the same opportunities to live, breathe, grow, and thrive as any other baby who is born alive. 

Prayerfully, families like those represented in our Trisomy community will help change the culture in the medical world of assuming the worst. And prayerfully, caregivers will remember their higher calling to care for and support LIFE instead of encouraging death.