Featured patient of the week is CDH angel Lincoln Alexander McAngus. Lincoln is the son of Samantha Gauthier and Kevin McAngus. This is what Samantha had to share about her son:
“I got pregnant very unexpectedly in December 2018. My boyfriend, Kevin, and I were very on the fence about whether we wanted children in our future or not. This little surprise scared us from day one, but we slowly started to get excited for our life change to come. We live in a small community called Paisley, in Ontario, Canada.
We went to our local hospital where I planned to deliver for our anatomy scan, when I was 19 weeks. Our tech started the ultrasound and after only 30 minutes stated she was done, but couldn’t get many good photos of the heart so I’d probably have to come back. I was really confused as I knew other women whose anatomy scans lasted 60-90 minutes and the techs tried really hard to capture as much as they could. I took this as my tech was inexperienced and was rushing. Two days later I got a call from my nurse practitioner telling me that I was being referred to a higher level hospital due to noticing an irregularity on our baby boy’s ultrasound. She mentioned it appeared his stomach may be in his chest but it very well could have been a bad shadow. Due to my conclusion of my tech being “rushed and inexperienced,” I brushed this off as probably just that, a bad shadow.
Four days later we were on our way to London, ON to their level 3 hospital. Once there we were taken in for an ultrasound, about an hour in my tech went and got Kevin and brought him in the room and we were joined by 3 radiologists. I knew right away when they walked in that this was not just a bad shadow and our previous tech was not rushed or inexperienced. She may have known exactly what she was seeing. The radiologist began to explain our son’s condition, but I’ll be honest, I hardly heard a thing. I started to cry and could hardly comprehend what I was being told. Nine hours and seven specialists later we found out our sweet boy had Congenital Diaphragmatic Hernia. Not only that but he was in the most severe category and had no detectable lung development at this time and we were given a 30% chance of survival at this time. Our world was rocked.
This little boy we had began to love so much was now threatened to be ripped away from us by a defect we had never even heard of. In London they felt that we would be best cared for at a higher level hospital, Mount Sinai, in Toronto, Ontario. And so our journey there began. We entered the FETO trial there, but unfortunately it is randomized and we weren’t chosen for the surgery, we were chosen for ‘expectant management.” Another huge blow. After our fetal MRI they concluded our boy was more severe than even London had known, with very little lung tissue or development and he was then given a 10-15% chance of survival. We were broken beyond repair that day. Finding out our survival was that low shattered us, but we knew we needed to carry on with the utmost hope. CHERUBS and the other online support groups gave us that. It truly carried us through my pregnancy.
I delivered the most beautiful boy, Lincoln Alexander McAngus on August 22nd at 12:22 after the fastest labour ever. He couldn’t breathe or cry at birth and was immediately taken to be resuscitated. He was stabilized after about 1.5 hours and I got to briefly meet him before he was transferred to the children’s hospital, Sick Kids, across the street from Mount Sinai. Once he was there we got to go over and spend some time with him. It’s truly the scariest thing seeing your baby connected to a complete life support system. We were told right away things didn’t look good for Lincoln once he got there. He was declining and crashing even while on the highest level on the oscillator. He had little to no chest rise and the doctors told us he wasn’t strong enough for ECMO. The next bit happened so fast. We were told our son was dying. Hearing those words was the most outer body experience I have ever had. My react time was slow, my brain was a fog and I was living every parent’s nightmare. The staff at Sick Kids Hospital was amazing and gave us every opportunity with Lincoln. We spent 4 hours with Lincoln, before taking him off life support, while in my arms at 11:45 am. We spent the next hours pouring a lifetime of love into him and hoping he felt every ounce of it.
I have learned so much about life, death, and love through Lincoln. I have learned more about the medical world than I ever hoped to. But all in all I know I am not alone. CDH takes 50% of its babies, and unfortunately we fell into the 50% whose battle was bigger than them. But I feel so connected to the CDH community because we all had our pregnancies, our babies first moments stripped from us. Regardless of survival or death we all mourn the loss of parts of our children. I, like many other moms, mourn the complete loss of our babies. But I find a small amount of peace in knowing I’m not alone, and that there are people fighting to make a difference. Hoping that one day the odds and percentages fall more in the category of survival, and that babies like our Lincoln will have a chance at life.”