After my 20 week ultrasound, I had the blood test to determine the likelihood that Matthew would have Down syndrome. We had 10 days before we got the results. In that 10 days, J.P. and I were able to digest what Down syndrome would mean for our family. By the end of that time, we had accepted that God had been preparing us for Matthew, and Down syndrome, for years and that he was meant for our family. At that point I am sure I was still hoping that maybe the test would come back negative for Down syndrome, but I was ok with it being positive. I knew in my heart that it would be, and our doctor confirmed that on a Thursday afternoon.
Over that weekend, J.P. and I immersed ourselves in learning as much about Down syndrome as we could. We each had a different book and we read them cover to cover and shared interesting information with each other along the way. It was overwhelming at times, but we still felt fairly optimistic that we could take it on. We already had the most amazing support group in our families. We have friends who have kiddos with Down syndrome who would be there to help us along the way and answer all of our questions. We have kiddos who have Down syndrome in our lives to remind us how amazing they can be. We told our immediate families about Matthew's Down syndrome diagnosis and were surrounded by love and support.
Because they saw a bright spot on Matthew's heart at my 20 week ultrasound, we had a perinatologist appointment scheduled for the Monday after we got his diagnosis. That is the appointment that truly rocked our world. We went into the appointment hoping for good news about Matthew's heart, but once we got there his heart was not what the doctor was most concerned about. The doctor kept saying "congenital diaphragmatic hernia" like we were supposed to know what that was. He explained it a little bit and told us we would have to deliver Matthew somewhere besides Tulsa. There was not a surgeon in Tulsa who could handle CDH and a heart defect. I didn't fully grasp the gravity of the situation, but J.P. did. As the doctor was leaving the room he said, "I wish I had better news to tell you, I am sorry."
When I got home I googled "congenital diaphragmatic hernia." That is when it sunk in for me: this baby is going to be born fighting for his life. Statistics say that there is a 30-50% chance of survival with a diaphragmatic hernia. If the baby's liver is up in the chest cavity, which Matthew's was, it is less than that. Throw in a heart condition, very, very bad. I felt like we had just been dealt a death sentence for our sweet baby boy. Suddenly Down syndrome felt like the best news ever.
People with Down syndrome can live long, healthy lives. Sure, there are medical complications along the way, and their own set of challenges, but nothing that can't be treated. Therapy every week: piece of cake. Delays in cognitive and motor development: no problem. Lots of extra medical tests throughout life: easy peasy. Congenital diaphragmatic hernia: a major uphill battle.
That is the day that Down syndrome got put on our back burner. It was secondary to Matthew's CDH. If he doesn't make it through surgery and recovery, then the fact that he has Down syndrome does not matter. All of our focus went to making sure Matthew could survive CDH.
J.P. and I vowed to each other that we would do absolutely anything to give our sweet little baby a shot at the best life possible. If that meant moving half way across the country to get the best care, we would do it. I found a doctor in St. Petersburg, Florida who only takes CDH babies who have been given almost no shot at life. We were ready to go, if necessary. We are so grateful that it never came to that.
Thankfully, that was the end of our bad news. From that point forward, every piece of information we received gave Matthew better odds. In Dallas we learned that his CDH was on the right side, which only occurs in 5% of cases. Babies with CDH on the right side have a much higher rate of survival, closer to 80%. And the fact that his liver was elevated was not so bad because it is supposed to be on the right side. When we visited Kansas City for the first time they discovered that he no longer had a heart defect. This was the life-changing news that changed Matthew's prognosis for the better. If his little heart could stay strong, his chances of making it through surgery and recovery were good. The doctor was literally grinning ear-to-ear when she delivered the news. We left Children's Mercy that day filled with immense hope for the first time in weeks.
This is the first time I have been able to sit down and actually write out those numbers, to reflect on the fact that we weren't sure if we would get to bring Matthew home with us. We are far enough removed that I can look back and say Matthew is a survivor. He survived CDH, and is thriving.
Matthew's tumultuous start to life has put Down syndrome into perspective for us. It will be with us, and Matthew, for the rest of his life, but it is nothing we can't handle. Matthew is his own little person, and Down syndrome is just a little piece of him. We are so grateful to be at a point in his journey where we are dealing with normal baby problems, like sleeping through the night and crying in his carseat. We don't know what lies ahead for Matthew, but we are hopeful that his biggest challenge is behind him.
No comments:
Post a Comment