I said several times during the pregnancy that Jonah was as stubborn as the rest of us. Coming from a largely German and Irish family, that says quite a bit. It was pretty often that he wanted to stay in the same position – usually when Cassy wanted him to shift off of her bladder. It seemed like every ultrasound we’d have done was a gymnastics lesson, putting Cassy in funny positions to encourage Jonah to move just enough that we could see the things that needed to be seen. Shift left, shift right, sit up, lay down, raise the feet, lower the feet, up on all fours, walk around a bit and come back… It would have been easier if they just put her in a human sized container and spun her around.
During our third ultrasound they were still having a hard time seeing certain things and we were told we’d need to go up to Portland where they had the facilities and the specialized staff to coax him into position. We also felt like there was something they weren’t telling us. Before any of the Trisomy stuff began to take form – before any of those decisions presented themselves and we were just another expectant family – we found out that Jonah had a number of anomalies that would need corrective surgery at some point. They call them defects, which is uncomfortable for anyone because it’s hard not to feel like they’re calling our children defective. Some things are different and many of them would have ripples with how his body functions, but nothing was wrong with him. It was a stigma that I had to grow comfortable with as a function of terminology. These things, however, were many.
Jonah had a complete bilateral cleft lip and palate, meaning his lip didn’t fully close across the top on either side and the tissue under his nose – the indent that we all have – was only connected to the bottom of his nose and the roof of his mouth was in the same condition. Correctible with surgery once he was old enough, but likely meant he would need to be tube fed or with a special bottle if he could make enough suction. His head was a little taller than is typically seen and his eyes didn’t develop placement correctly – his right eye was lower and closer to his nose than it should have been. We were told that his abdomen was smaller than it should have been – though it looked fine when he was born. They thought he would have rocker bottom feet, where his bones don’t develop correctly beginning at the ankle and his feet would look like the feet of rocking chairs. When he was born, only one hadn’t developed properly and wasn’t as bad as they expected. Inside, he had problems with his heart. He didn’t have tissue to separate the ventricles, so the incoming and outgoing blood was mixing (meaning it didn’t have the right amount of oxygen in his blood when it went out into his body). He had a companion condition with this where both outlets came out of the right ventricle, but it would be fixed in the same surgery that could fix the blood mix issue. He had a hole in an outside wall of his heart, and there was a vein coming into his heart from the wrong side. Lastly, they thought his gallbladder had a duplication though it ended up being just extra tissue attached to it.
Put yourself here, right into the situation: this is your second pregnancy after losing your first less than a year ago. You’re at a hospital with staff who are nice enough but clearly need to detach from the patients they serve, so their responses are measured and cold. You’ve just been told that your baby needs open heart surgery within a few weeks of birth, will have surgery on his lip and palate after a couple of months and will probably be tube fed, will have a corrective apparatus for his feet within a few days of his birth, and will likely have problems with his eyes. His size is smaller than it should be, and they still can’t see him well enough to tell how his brain is developing because he’s so damn stubborn. Next, they tell you something you didn’t expect. They tell you that you can decide not to continue the pregnancy, because he likely wouldn’t make it. They tell you that these things are likely leading to a prognosis that is considered “incompatible with life”, and that it is recommended to just shut it down like we’re talking about a car or fridge that isn’t working right. Essentially, they tell you that your life – and your child’s – would be better if he didn’t make it. Re-read that. My son’s life would be better if we gave up on him. My life would be better if I let him die. I think they missed some of their terminology – ‘easier’ might be what they were looking for because it sure as hell wouldn’t have been better.
This is what thousands of families experience every year across the world. Our hearts hurt every single day for our children that didn’t make it and even more for the ones that didn’t get a chance. Personally, I’m so thankful that we got to experience every bit of those 37 weeks with him because the chances were over 50% that we’d lose him before week 30 based on the numbers out there for Trisomy 13 pregnancies. Our team at OHSU was amazing in making available any form of care and testing we felt was appropriate for our son, but that is the exception and not the rule. The only way these things change is by the strength of the parents who fight for their children and hospital staff listening to their hearts instead of training based on 30-year old principles.
I got in a swimming workout yesterday at our gym, and saw something again that I didn’t expect. A mother and her adult son were taking a water exercise class together, which is neat but not noteworthy. What is was the fact that her son had Down Syndrome – otherwise known as Trisomy 21. It used to be considered a non-living condition like Trisomy 13 and 18 are now. While Trisomy 21 children tend to have less medical anomalies than the other Trisomy kids do, it was by the sheer force and love of their parents that we arrived at a place where it is more accepted to raise a child with this condition and live a life with this type of responsibility. The premise that these children deserve less is still there, but is held in lower esteem that it used to. It’s my hope and prayer that one day children and parents like us will get to see a day like this. That one day they are told about the conditions coming their way without being told they would be better off without their child. We fought for Jonah because he was our son and we wanted to experience his life desperately, everything else be damned. For as much as we’ve learned about the human condition, we cannot predict the miracle of life nor can we see the plan that God has for us.
My heart hurts every day for my son and for our family. While Cassy and I had the privilege of spending six hours with our son in our arms, the rest of our family got only minutes. Had we taken the path offered to us none of us would know the depth of love and loss like we do today, and very likely nothing would have carried his spirit forward. I’m fighting every day to honor him rather than purely mourn for him as my way of grieving but also carrying the path one step forward for future parents of Trisomy children because we’re all in this together. Every parent, every child, every uncle and aunt, and every grandparent. Together. What are you fighting for?
Live your life with intent – go after your dreams, fill your heart with purpose, and make your presence felt. We’re all in this together.