Magnificent Miles

I've been trying to put this post together for a few days now, but it's been difficult trying to put into words what my family, especially my sister and brother-in-law have been going through over the past two weeks. Many of you already know the situation, but I'm sure there are many many questions which is how we all feel. I'll try and explain what I know at this point. On November 5th, my nephew Miles Bryce was born. He was full term and my sister had a natural delivery. She was a high-risk pregnancy because around week 28 Bonnie realized she was simply too big. Her doctors examined her and confirmed her suspicions. The baby had not properly been ingesting the amniotic fluid and as a result, my sister had a very high amount of amniotic fluid. Over the next 8 weeks, the doctors kept a close eye on her and drained at least 4 liters of fluid from her. Once she was full term, they decided to induce so they could try and figure out what the problem was.

Despite the normal pain associated with delivering a baby, the delivery went well. My sister was not able to hold the baby because the doctors immediately had to start performing their battery of tests to determine what, if any, issues Miles was facing. It was quickly determined that his esophagus was not connected to his stomach. This is called atresia. The day after he was born, Miles had surgery to correct this issue. The recovery for this type of surgery is at least 4 weeks, so they knew he wouldn't be leaving the hospital anytime soon. At this point, Miles was also diagnosed with fistula - which means he did not have a passageway to be able to breathe through his nose. We were optimistic about these two issues because we knew they were correctable. Then came the news that the doctors found two holes in his heart and he would need to have open heart surgery. They said if it was only one hole they would let it be and it would probably close up on its own, but since there were two, they would need to operate in a month or two when Miles was a little stronger. As heartbreaking as this was to hear, we all remained positive because, once again, this was fixable.

At this point, my mom and I decided to fly out there to be with my sister. She needed us and we really needed to be with her and Michael. A couple hours after we booked our flights for Wednesday morning, we found out the devastating news. Miles was diagnosed with CHARGE syndrome. So many questions, so little answers. A couple hours after my mom informed me of the diagnosis, I started my research. I had never heard about this syndrome, as most people haven't. 1 in 10,000 children is diagnosed with CHARGE. The diagnosis came from a geneticist who based her findings on the combination of issues that Miles was facing (atresia, fistula, heart defects, ear lobe abnormalities). Many CHARGE babies have some sort of hearing and vision loss, if not a complete loss. There can also be swallowing issues and acid reflux. Balance issues, developmental delays - the list just goes on. It's caused by a genetic mutation that probably occurred during the first few weeks of pregnancy. During pregnancy, they had a variety of tests (genetic and other types) and all came back clear. Apparently there are so many genes that can be tested that they can't test them all.

All I could think about was my sister and how her life is now changed forever. The flight from Florida to California was long and nerve-racking. Luckily my mom and I had each other to lean on. After a day of flying, we finally arrived in California and I have never been happier to see my sister and brother-in-law and give them the biggest hug anyone could ever imagine.

My sister lives about 45 minutes from the hospital, but they were able to rent an apartment across the street from the hospital(owned by the hospital). They couldn't be any closer. We spent the next two days spending time next to Miles and comforting my sister and Michael. As distraught as we were, we tried to remain strong and positive for their sake. They needed us now more than ever. On Friday he had surgery to correct the fistula issue. Miles has already showed us what a trooper he is by having gone through two surgeries in the first week of life and beginning the process of recovering from both. My sister still has not been able to hold him, but she can put her hand in the incubator and touch him. We all realize we have to take this one day at a time. It's hard not to look into the future and wonder what it will be like. Will he be able to see? Will he be able to hear? Will Bonnie be able to return to work? What kind of medical intervention will he require? Like I said before, so many questions, yet so little answers.

It was very hard to leave California - to leave my sister and my adorable little nephew. It's so hard to be on the other side of the country while they have to deal with this on a daily basis. I wish I cold be there to help, to offer my support, to do what I can. But I know that he is under the best of the best medical care in the best hospital possible. They will do everything they can for him. I've come to terms with the fact that my nephew is special and I think that makes me love him that much more. Every little step he takes is going to amaze and astound us. As a friend of mine said to me "He was given to Bonnie and Michael as a gift." While it will be a long and arduous road ahead, I know Miles will continue to amaze us all.