Something Isn’t Right…

“Something isn’t right in the ultrasound.” Those are words no expectant parent ever wants to hear and, unfortunately, last Thursday my wife Amy and I had to hear those words. The OBGYN office immediately set up an appointment for us with a Maternal-Fetal Medicine office at Winnie Palmer hospital and we left with significantly more questions than we had answers.

What followed was a long week of waiting, praying, and researching. We were told two possible conditions that our baby girl could have and spent a lot of time reading what information we could find about them. One of the conditions, CPAM, was hard to find much information on as it is incredibly rare (only 1 out of every 30,000 babies). Earlier today, we went in for a detailed ultrasound and a four hour long appointment at the hospital. After a long week of waiting for answers, we found out that not only does our child have CPAM, but she has an even rarer form of an already rare condition. It’s funny how sometimes an answer only gives you more questions.

Essentially, there’s a massive tumor taking up over half of her chest cavity on her left side. This growth was supposed to be lung tissue, but something went wrong and it’s now just a mass of disorganized cells crowding out her organs. Her left lung can’t even be seen on an ultrasound and her right lung is only 15% of the size it should be at this stage. Her heart has also been pushed far to the right side of her chest where the tumor is putting intense pressure on it as it beats.

This tumor is filled with countless disorganized cysts. Normally with this condition they see one or two cysts that can be drained, allowing the tumor to shrink and the organs to grow. In her case, there are simply so many cysts that all we can do is watch, wait, and pray. We will be going in on at least a weekly basis for the foreseeable future for ultrasound scans to check on the growth of this tumor and the cysts from week to week. If the cysts are shrinking, meaning they’re draining, then our daughter has a great chance of making it to 28 weeks (we’re currently at 21 weeks). At that point her growth rate would increase, outpacing the growth rate of the tumor in her chest and creating space for her heart to beat and her lungs to expand and grow. If, however, they’re growing, then the outlook is not so good.

The terrifying reality is that if the pressure being exerted on her heart continues to increase it could either cause it to stop beating at any time or prevent blood from properly circulating causing the body to fill with fluid (Hydrops). Either scenario could be fatal. We are praying and hoping that the cysts begin to drain and that baby girl holds on till she reaches 28 weeks or so and starts to grow faster than the tumor.

If we can make it to that point, then it’s a matter of watching and waiting to see if her lungs develop enough to oxygenate the blood in her body after birth. In the best case scenario, the tumor will drain and stop growing, and her lungs will have the opportunity to grow and develop to the point where she doesn’t need a machine to oxygenate her blood for her after birth. She would still likely need surgery to remove the tumor at some point in her first year, and will be on oxygen for anywhere from months to years. If the lungs don’t develop enough, she will likely need to be taken directly from the womb and immediately hooked up to machines to oxygenate her blood and keep her alive while they surgically remove the growth. They then would keep her on these machines until her lungs could develop.

In any of those scenarios, we’re looking at anywhere from weeks to months to even up to a year in the NICU. Regardless, she will likely never have full functionality of her lungs. Just how bad that will be, and how normal of an active life she can live is something we simply will not know until the time comes. She may never be able to run, exercise, or play sports; but there’s always the chance, however unlikely, that she may. The doctor told us today to not be alarmed if she doesn’t move very much due to her situation and that it’s normal for these babies to rest and not move or kick often. Already our little girl is breaking expectations and she won’t stop doing flips, rolling around, and kicking all the time in Amy’s belly. She’s already showing that she’s a fighter (of course she is, she’s a Nettles) and we’re praying every day that she can hold on and make it to 28 weeks and beyond.

Please keep us and our daughter in your prayers. Both for her health/development, and for us as a family as we navigate this difficult time. We know that she’s in good hands. God is good and we’re blessed to live in a city with one of the greatest children’s hospitals in the world with an amazing team of doctors that will be caring for her. This is a frightening time for us and we’re living every day with the knowledge that her fight could end at any moment. That’s what makes each and every kick and movement so precious and special to us. We love you all, and we will walk this path wherever God may lead us, and we ask that you walk with us in prayer.

Love,

Stephen and Amy (and Evander who’s going to be such an amazing big brother)