My father passed away in January 2007 after a lengthy battle with Parkinson’s disease. That was one of the worst days of my life. Shortly after that, I had one of the best days of my life when I found out I was pregnant. When we learned the baby was going to be a boy, we decided to name him Brandon Ike—Brandon after my father, Barry, and Ike after my grandfather, who had passed away the year before. Along with my husband, they are the greatest men I have ever known. We were beyond thrilled for Brandon to carry on their legacy.
Brandon was born September 18, 2007, in New York City. At 30 weeks, he was tiny, weighing just two pounds, 10 ounces. He was born with a condition called Pierre Robin syndrome, which meant he had a small jaw and a cleft palate (a hole in the roof of the mouth). The small jaw made Brandon’s tongue roll back, and, as a result, he was not able to swallow my amniotic fluid while he was still in utero. This is what caused my premature labor. In addition, Brandon’s tongue was blocking his airway.
After medical professionals tried unsuccessfully to intubate Brandon at St. Luke’s Roosevelt Hospital, he was transferred to New York Presbyterian Hospital in uptown Manhattan. Just before the transfer, I met Brandon for the first time. He was on a warming bed, and I held his little hand. It was love at first sight.
My husband, Matt, headed to the hospital with Brandon while I had to stay at St. Luke’s for a few more days since I was still recovering from my C-section. I didn’t know it at the time, but Matt was told that Brandon was the sickest of more than 60 babies at one of the top neonatal intensive care units (NICUs) in the country. He needed to have a tracheostomy performed that evening, as that was the only way they could get an airway open for Brandon. For those of you who don’t know (I didn’t before Brandon was born), a tracheostomy tube (or trach, for short) is a small tube placed in your neck through which you breathe. Doing this on such a small baby was extremely risky, and Brandon had only a small chance of surviving that first night, but thanks to his amazing surgeon, he made it.
My family did not share this information with me until after Brandon was more stable, because I had just come out of surgery myself and they were worried about upsetting me. I am grateful that they waited to tell me until both of us were more stable. I am not sure if it was partly the effects of the morphine or Percocet, but even though Brandon was born so early and I knew he would be in the NICU for some time, I was just so happy he was finally here and we felt lucky we got to meet him two months early. My poor family kept walking out into the hallway so as not to cry in front of me as they were worried he wouldn’t survive the night, while I raved about how cute he was. At the same time that I was feeling so happy and lucky, my husband was curled up in a ball on a couch at the other hospital, hoping Brandon would make it through the night.
Two days later, I was transferred to New York Presbyterian Hospital and was able to see Brandon in the NICU. From that day forward, his health kept improving, although he needed a feeding tube because his jaw was so small and he had a cleft palate, which made eating by mouth extremely difficult. We were told that he could have a jaw distraction surgery to make his jaw larger when he reached 12 pounds in weight and that his cleft palate could be repaired when he reached one year of age.
Brandon stayed in the NICU for three months and then was transferred to Blythdale, a rehab facility in Westchester, where he grew stronger. While he was there, we had to learn how to work with his G-tube (gastrostomy tube) and trach before taking him home. We also had to get nursing put in place at home, as Brandon needed to be watched 24 hours a day. We were warned that if his trach came out, he could die. We were so scared this might happen that we decided there needed to be two people with Brandon at all times (this is not the case for everyone with a trach). Although I had previously worked for a promotional marketing company, which I loved, and had planned to return after a three-month maternity leave, all that changed once Brandon was born, and I decided to not return until “things calmed down” at home. Well, things never really calmed down, and Brandon had other plans for me, which I was happy to oblige with. I never returned to that job and instead became a stay-at-home mom, nurse, advocate, and so much more.
Brandon came home at four-and-one-half months and had his jaw distraction performed shortly after and his cleft palate repair done seven months after that. In between, there were many other surgeries, infections, and doctor visits, as well as speech therapy, physical therapy, occupational therapy, and special instruction visits, but also lots of love and fun. People often ask me how we made it through all of that. The answer is simple: Brandon was our first, we didn’t know any different, and we were so happy to have him. Early on Brandon was diagnosed as having Pierre Robin syndrome and the doctors told us there were no other disabilities associated with it for him. Nothing unusual came back on any of his genetic testing or his brain scans. Therefore, we braced ourselves for a hard first year filled with many surgeries, but we looked at each one as one step closer to having a healthy boy. Each surgery was a hurdle we had to jump through in order to remove his trach and reach the point where Brandon became a healthy, typically developing boy.
The feeding tube wasn’t challenging for us, but we had a very hard time with the trach, because it needed constant suctioning. In order to do this, you use a machine with a tube attached to it, which sucks the mucus out of the trach. Brandon needed a lot more suctioning than most children with trachs, frequently as often as every 10 minutes. When he reached 20 months, his trach was finally removed. Prior to that, we had to take his suction machine, oxygen tank, and feeding pump everywhere we went. I swear his stroller must have weighed 80 pounds, but we were so happy to join the world again that once the weather became warm, we were in Central Park almost every day regardless of the obstacles.
As Brandon became older, the developmental gap between him and his peers grew. With every playdate, we came home with a twinge in our stomachs, knowing the gap between Brandon and his playmates was more than just prematurity and medical issues. At three years old, he still wasn’t talking or understanding much of what we said, he had just started walking, and his eye contact was still poor. At this point, developmental specialists diagnosed Brandon with global developmental delays, for lack of a better name.
At age three, when he started preschool, things started to calm down medically for Brandon, and we began to think about having another child. Since Brandon’s disorder had not been diagnosed as having a genetic basis, there was no testing we could do to determine whether a sibling would have similar problems, but we hoped and believed everything would be okay. I signed on as a patient with the high-risk practice at New York Presbyterian Hospital and received progesterone weekly to avert prematurity. On February 29, 2012, our beautiful daughter, Skylar, was born. Yes, she is a leap year baby, which couldn’t be more fitting for her.
Skylar and Brandon could not love each other more. She has been obsessed with him since she was a baby, when the first word she would call out upon awaking in the morning was “BraBra,” for “Brandon.”
Shortly before Skylar turned five and Brandon turned 10, we completed a rare genetics study and discovered just two days after his birthday, that Brandon has MED13L, which is a deletion of one of his genes. We finally had an explanation for all his delays, feeding issues, small jaw, etc. Neither I nor my husband are carriers of MED13L. It was just a random fluke that happened at conception. MED13L is exceedingly rare, with only about 200 people currently diagnosed with it. However, I’m sure that with new testing, more people will be diagnosed. While it would’ve been nice to have had this information when Brandon was first born and it does finally give us a label, it doesn’t tell us anything we didn’t already know. I had always thought a diagnosis would make describing Brandon easier, but at the end of the day he’s just B, as all who love him call him.
Today at 11 years of age, Brandon is still nonverbal, often drools, has a feeding tube, wears diapers, and can at times have behavioral issues. More importantly, he is also the sweetest, cuddliest, most lovable boy you’ll ever meet, and he is carrying on my, grandfather’s, father’s, and my husband’s legacies: He has the same million-dollar smile as my grandfather had, my father’s ability to overcome more obstacles than most while charming all in his path, and my husband’s incredible love for his family along with his sports obsessions.