We were excited to find out we would be having a little boy! We were suprised, however, to learn that he had a diaphragmatic hernia. My care was transferred to a specialist who followed us closely through the rest of my pregnancy.
After an amniocentesis to check for chromosome abnormalities and a cardiology consult, we were reassured that the only thing wrong with our son was the CDH. It was a "fluke".
Brigham was born January 7th, 2011 after only 3 1/2 hours of labor. It was a big blessing for me because the next few weeks were sure to be tough.
Our sweet little boy was whisked away to the NICU (daddy got to go with him) while I recovered in L&D. At 18 hours old, the NICU called us in to tell us he would be going on ECMO. Extra-corporeal membrane oxygenation basically means a machine would oxygenate and circulate blood for him so his lungs could rest.
We had been expecting for his body to have recovered enough after a few days to have the hernia repair done. Even though we'd been told surgery doesn't fix the real problem (stunted lung development) it seemed like a step in the right direction. He'd have daily heart and lung ultrasounds to check his readiness for surgery. He wasn't getting better...
The poor boy was super puffy from all the extra blood products ECMO required, and his body was having a hard time adjusting.
At two weeks old, the neonatologist and pediatric surgeon approached me and my husband. We needed to decide if we wanted to do the surgery anyways, or try a few more very aggressive medicinal therapies to see if they'd help. Waiting wasn't helping anymore. We decided to do the surgery.
Six days after the surgery was another decision day. He'd been on ECMO for 19 of his 20 days. It was too long. He was on his fourth ECMO circuit (which means he had "burned out" three others). His body couldn't handle being on ECMO anymore. The machine had been turned down as low as possible already and it was time to take him off.
We knew that without ECMO his lungs would have to take over the job of oxygenating his body. The xrays had shown that he had almost no left lung at all. Two tiny buds. That's all. His right lung, although structurally there, was not very functional. We were very nervous as they clamped off the lines that connected our sweet baby to the machine. His oxygenation levels dropped rapidly, but then hovered around 68% (obviously, ideal is 100%). Although the ventilator was on its highest settings, over the course of the afternoon, he was not improving.
At about 10:30pm, the doctor approached us and said, "Anything we could do now would be doing things to him, not for him. He's dying." By this point we had spent almost 3 weeks in the NICU. We knew and loved all our doctors and nurses and knew they loved us and Brigham even more.
It was horrible to have to do, but we made the decision to have the doctor remove the breathing tube and let us hold our sweet baby boy for a few minutes. We had never had the chance to hold him in our arms. We were blessed to have about 20 minutes snuggling him before he passed away. It's by far the hardest thing I've ever experienced, but we were very comforted with the feeling of noble spirits in his NICU room and a confirmation that our Brigham had bigger and more important things to do on the other side.
He passed away on January 27th, 2011 at 20 days old.
We knew his life would be a roller coaster, what we didn't realize was that the roller coaster would continue after he passed away. We've had good days and bad days since he passed, but having the support of our friends and family has made a huge difference. Please join me in creating a strong support network where CDH parents can come together and strengthen each other.
