She is sitting up on her own, eating real food, loves push-ups (are we sure she’s my kid?) and Bennie and the Jets (oh wait, yep… she’s mine). She wakes up every day in the mood for a dance-party. She cracks up when we tell the dogs “no.” She nearly faints from happiness when we play outside or when she gets to swing at the park.
“Incompatible with life” simply doesn’t accurately describe her.
So why did so many doctors, websites and pamphlets tell us that she was when we got our prenatal diagnoses?
I’m not going to lie and say that she’s “normal.” There’s certainly health issues and developmental delays… but for every issue that’s come up, there’s always been a trajectory to conquer it.
Why were we told by MFM during our pregnancy that there would be no point in fighting for this baby?
That treating this baby would do more harm to her than good?
Since Avonlea’s birth, we’ve been extremely blessed to have had very little push-back from doctors and specialists in our quest to give Avonlea any and every treatment she needs and to give her the best quality of life possible. We were warned by fellow Trisomy families when we that it would be so difficult to find cooperation within the medical community to fight for this child. There have been a few doctors who have said “If this were a ‘typical’ baby, I would treat her. But because of her Trisomy, I’m not recommending the same course of action.” But for the most part, we’ve had an easy go of it here in Charlotte.
Why are families all over the U.S. and beyond struggling to find doctors who are willing to give their
child treatment? To give them a better life? Or to give them a life at all?
About 6 months ago, I turned off notifications from my Trisomy 13 family Facebook group. The number of sweet newborn babies passing away from lack of medical care was heartbreaking. There are certainly cases severe enough where an intervention could cause more harm than good with a Trisomy 13 patient… but I was seeing many cases where intervention stood at least a chance of giving a baby a shot at life, and the parents were not even open to trying. And I really can’t blame them…
I remember the shock, the grief, and the fear that clutched us before Avonlea was born, hearing MFM doctors, who we trusted, tell us that our baby was not meant to live. When they told us not to monitor her heartbeat during labor because IF she went into distress, I would not be allowed to have a c-section to save this baby, we nodded compliantly. When they told us not to pursue heart surgery or other life-saving/ life-improving procedures on the grounds that those interventions would only cause my baby more suffering, we listened. We were too exhausted to do any research to the contrary, weighed down by the emotions coursing through us and trying to come to terms with the fact that our baby wasn’t the “perfect,” “healthy” baby we had wanted, and that our lives would never be the same moving forward. Our lives weren’t going to be what we’d planned, or wanted… It was easier not let ourselves question the doctors, who we are supposed to be able to trust.
(For the record, it was actually suggested that we terminate our pregnancy at 28 weeks, and again at 30 weeks. I’m not going to get into that too much at this time, but look at this kid! I mean really? What a mistake that would have been.)
But somewhere along the line between Avonlea's diagnosis and her birth, something shifted in our hearts. Brian and I decided that if we pursued a zero-intervention plan and, in the process, lost our baby, we would never forgive ourselves. We would always wonder if there was something we could have or should have done that could have given us a life with her. Our amazing OB’s didn’t blink an eye when we said we wanted to monitor her heartbeat during labor… we wanted a c-section if she needed one, even if it meant only getting to hold her alive for 5 minutes versus a still-birth… and we wanted a full-intervention plan. We had no idea at the time that their compassion and compliance with our wishes is highly out of the ordinary in these cases!
When Avonlea was born alive, healthy and breathing on her own, we called her a miracle. There are certainly some aspects of her medical situations that were miraculous, but I think the bigger miracle is that so many pieces of the puzzle came together so perfectly… I moved to Charlotte from California in 2006. The egg involved in conceiving Avonlea had had an extra chromosome since I was in my own mother’s womb… if I had stayed in California, gotten married to someone there and gotten pregnant the same month, I might not have found a team of doctors willing to listen to MY wishes. I just happened to starting to going to The Bradford Clinic starting when I was 18 years old for annual exams because they took my insurance. They are located in Charlotte and I live in Rock Hill, so it would have made sense for us to find an OB practice closer to home by the time I got pregnant, but for some reason we didn’t. In 2009, I arbitrarily got thrown into photography and a successful business grew out of that. Not only did it connect me with an amazing group of female photographers in the area and with Cheyenne Schulz who documented our birth experience beautifully, I have the ability to document Avonlea’s life on a day-to-day basis.
I don’t think it’s a coincidence that so many moving parts just fell into place so perfectly… that we, of all parents, were given a baby with Trisomy 13… or that we of all Trisomy parents, were given a baby who has done so amazingly well!
So why did all the moving parents fall into place for our family? Why are other parents still fighting for same opportunities for their child?
Is it because the children who survive have cognitive delays? Is our societal fear of disability and mental retardation so great that we think that children who will grow up developmentally delayed don't deserve that life?
I’ve asked myself a lot of WHY's a lot over the last 3 years, and the only answer I can come up with is this:
We are meant to do something. Something big. Something challenging. Something that will make a difference.
It's time for us to turn the notifications back on... to plug back into our community... to brace ourselves for the possible backlash... and to use our gifts, talents and knowledge as a resource for the good of Trisomy children and their families.
Brian and I are excited to say today, on Trisomy 13 Awareness Day, that we are starting a non-profit project that we hope will be the tipping point for change in the way the world sees Trisomy 13. We’re not ready to reveal too many details yet, but the goal will be to educate the public about Trisomy 13, what the lives of Trisomy families are really like as opposed to what many doctors tell patients after a diagnosis, and the potential many of these children truly have when given treatment that a “normal” baby or child would be given without question.
Trisomy 13 is something you never really hear about until it’s happening to you. And I think it’s unfortunate that the first time I was ever told anything about it was during the most vulnerable, shock-ridden, grief-stricken moment of my life following the moment I was told my baby wasn’t going to live. The goal of this non-profit project will be to empower the future parents of future Trisomy babies with knowledge so that, when they are the ones in the exam room, hearing that their baby is “not normal,” they will already be educated to know that they don’t have to take one doctor’s recommendation lying down, so that they can fight for their child to be treated on a case-by-case basis rather than generalized into being written off because of one extra chromosome.
Again, I’d like to reiterate that there are certainly cases of Trisomy 13 where interventions are not the best course of action for the baby. I get that! But newer research is showing that interventions can give many of these families precious years with their children. And until we shatter the self-fulfilling prophecy of “incompatible with life.”
Follow this link to learn more about Trisomy 13 and 18 from Dr. Marty McCaffery: