Jan 22, 2019 Latest post:
Feb 16, 2021
On Friday December 7, 2018, our lives changed forever. At a routine ultrasound to see our sweet baby baby boy David Matthew, it was discovered that he was missing a kidney and the kidney he did have, was cyst-filled and non-functioning. This diagnosis came with other devestating news. Because of the non-functioning and non-existing kidney, there is no amniotic fluid being produced and no bladder. Amniotic fluid is essential in lung development for a baby. Therefore, without the Amniotic fluid, David’s lungs would never develop and after being born, he wouldn’t be able to breathe. Pulmonary Failure. Not Compatible for Viable Life. For some reason, those were the words that have stuck in my head these last few weeks. We were devastated. We were left with two recommended options. Terminate the pregnancy, or carry David to term, deliver and hopefully get to spend a short amount of time with him before he passed. Termination wasn’t an option for us. His heartbeat was strong, and every other piece of him was normal except for his missing puzzle piece. As long as he was inside of me, he was happy, growing, moving (ALOT!) and “normal”. We could see him putting his hands in his mouth and even at one ultrasound placing his hands together like he was in prayer. After a few days of crying non-stop, Brad and I started doing our own research. That lead us to a name for his syndrome- Potter’s Syndrome. Unilateral Renal Agenisis to be more specific. Upon doing this research we were surprised to find that there have been babies that have survived! The treatment used is called Amnioinfusion. Now, this treatment does nothing for the actual issue with the kidneys but, it can help the baby’s lungs develop to a point that when he would be born, he would be a pulmonary survivor long enough to get him on a special kind of dialysis called Peritoneal dialysis. This would be followed by a kidney transplant after a few years. It was a small glimmer of hope. At 8am the following Monday (2 days later) I started making phone calls to every hospital in the United States that treats Potter’s Syndrome. Unfortunately, there are only a handful of Hospitals that do the infusions. Most of them are Trials, which are very specific and David wasn’t a candidate for. Although his one kidney is non-functioning, in research terms, he wasn’t the worst case scenario which is a child with no kidneys-Bi-lateral Renal Agenisis. After talking with a doctor at John Hopkins and not being eligible for their trial, I was given the number to Cincinnati Children’s Hospital. It’s been full-speed ahead ever since. We left on Christmas Day. Leaving Domenik, Daniel, and Stella was hard but it is what we had to do. We had testing all day on December 26th and met with a team of doctors that are willing to take on David’s case. Through extensive testing, MRI, Fetal Echocardiogram, and ultrasound, they found that Miraculously, though still in the abnormal range, David’s lung development isn’t that far behind a normal baby! We have decided to pursue Amnioinfusion. We will be making weekly trips to Cincinnati for treatment until he is delivered. After that, it is in God’s hands. We still need a miracle as this treatment is very new and the success rate is extremely low. There are only a handful of babies that have survived. But, to us, that statistic is better than doing nothing and being guaranteed that he won’t survive. We will do what we can now and let God take the wheel when he is born. We won’t give up on our little man. One Stone at a time baby boy.......