Meet Alex

Alex was born on October 8, 2011 at 3:47am. He was four weeks early and weighed 6lbs 1oz and was 19 inches in length. Alex was admitted to the Sky Ridge Neonatal Intensive Care Unit (NICU) approximately 20 minutes after birth due to respiratory distress. We were told that because he was born early and so quickly his lungs didn’t have a chance to clear of amniotic fluid.  I was in labor for less than 2 hours before delivery and only pushed once! So very different than my first-born! (Alex has a big sister, Maya. She's 2 1/2).

Once it was clear that Alex would not be able to breathe without support from a continuous positive air pressure (CPAP) machine, Alex was transferred to the St. Joseph Hospital NICU in Denver, CO on October 10, 2011, to receive a higher level of medical support. While at St. Joe’s, Alex received a dose of surfactant, a chemical that helped to develop Alex’s immature lungs. He also had jaundice and was diagnosed with necrotizing enterocolitis (NEC), a bicuspid aorta (a heart murmur), hypospadias and a hernia/hydrocele.  One of the neonatologists also recommended that Alex be tested for a genetic abnormality. He mentioned several possibilities, BWS was one, but all I heard was “genetic abnormality” before my heart sank and my mind went numb. The blood work was collected and sent to the Mayo Clinic – we knew it could take up to eight weeks for the results to come back, so I focused on Alex and the day-by-day steps we needed to take in order to bring him home.  Alex was slow to start eating on his own and after several doses of antibiotics and abdominal x-rays, Alex was finally sent home 20 days later on October 28, 2011.

For the next week, we tried to get into a normal routine, but we knew something just wasn’t right.  Alex was spitting up… a lot. And it wasn’t normal baby spit-up, it was a neon yellow bile-like substance. And as the days went by the volume increased until he was projectile vomiting this neon yellow goo. A week after he was released from the NICU, we visited the pediatrician, and we were immediately sent back to St. Joe's NICU.  More x-rays. The doctors suspected that he had an abdominal blockage and surgery seemed imminent. The x-rays were inconclusive.  More antibiotics. Alex’s genetic test results came back -- he did in fact have BWS. After a week, Alex rallied and was sent home on November 14th. Less than 24 hours later, on the afternoon of November 15, we checked into Colorado’s Children’s Hospital. Alex continued to spit up and refused to eat. He had abdominal surgery early on the morning of November 16, 2011. The surgeon found what the x-rays could not detect -- Alex’s small intestine was connected to his umbilical cord causing a kink, similar to a twisted garden hose. Alex wasn’t born with an omphalocele visible from the outside of his body, but we knew that this was a symptom of BWS. Alex recovered quickly from surgery and was sent home the day before Thanksgiving. We truly had so much to be thankful for!!

For the next two months we enjoyed having our two children together under one roof. Alex wasn't on oxygen or any medications and he was gaining weight... until the end of January when he came down with a bad cold. 

Alex was hospitalized with RSV and pneumonia in late January/early February. This is when doctors realized that Alex was not getting enough oxygen – especially at night. He underwent a sleep study where they found that he had severe sleep apnea. Alex was put back on oxygen at night. Eating solid foods also presented a challenge. After meeting with specialists in otolaryngology and pulmonology we made the decision to consult with Dr. Jeffrey Marsh and make the trip out to St. Louis for a glossectomy (also known as
 tongue-reduction surgery). 

Alex is now seven months old and is a cuddly, happy and energetic baby boy. Like most kids with BWS, he has been gaining weight quickly and currently weighs close to 20 lbs! 

We are hoping that over the next several months Alex's breathing and eating will improve. We are also hoping that by undergoing the surgery at such a young age, Alex will not experience severe speech impediments and that his already protruding jaw will self-correct and he will avoid jaw reconstructive surgery. 

And remember that hydrocele/hypospadias issue I mentioned earlier? Alex needs this to be surgically corrected by a urologist. Dr. Marsh's office was able to coordinate with the Urology Department at the St. John's Mercy Medical Center so that both procedures could be conducted at the same time! Poor boy is going to wake up sore on top and bottom, but at least he doesn't have to undergo more than one round of anesthesia.   

We are hoping that by documenting our experience, other families can learn about this procedure and determine whether a glossectomy is right for their child.