Craniofacial Awareness Month: Camden’s Story

In honor of National Cleft & Craniofacial Awareness & Prevention Month, grateful mother Kristen E. shares her son Camden’s incredible journey living with a bilateral cleft palate and the care he received at Connecticut Children’s Medical Center.

October 22, 2015 was a day that changed my life. It was the day our son Camden was born. After a whirlwind of events, the pediatrician came in to do his first checkup after being just a few hours old. I watched closely as she was examining him and informing us of his stats then suddenly, she stopped. There was silence as she was looking in his mouth. She said to us, “he has a bilateral cleft palate, were you aware of this?” I was numb, I couldn’t think or speak. I didn’t even know what that meant. I never knew of a cleft palate, only a cleft lip. In our son’s case, he had an isolated bilateral cleft palate so the lip was not affected. Suddenly, different specialists from the NICU were coming in to look at our baby and there were talks of transferring hospitals. We were scared, nervous and so worried about this tiny human whom we’d just met. I was overcome with emotions and fear. This is when Connecticut Children’s Medical Center became a peace of mind for our family.

Upon leaving the hospital, Connecticut Children’s Medical Center had already scheduled an appointment with the Craniofacial team when Camden was only 5 days old. He had lost weight after we were discharged and was having trouble eating. I wasn’t aware there are a few different types of bottles that can be used for babies with clefts. Our speech pathologist, Kelly Mabry helped determine what bottle would work best for Camden, the angle we should hold him, how much time is an appropriate length to feed, etc. She put my mind at ease being so confident in her plan of care. She assured me he was going to be okay and that we were going to get through this.

We also met with the plastic surgeon, Dr. Charles Castiglione who informed me that when Camden was about 9 months old he would undergo a bilateral palate repair and that he has 28 years of experience in his field. We were also assigned a team lead, Monique France, RN who I could contact anytime with any questions or concerns. I felt as comforted as I possibly could, especially knowing I had someone to confide in. Monique always responds very quickly and addresses all my concerns. She always puts herself into my shoes and understands where I am coming from. I work closely with her to this day.

As months went by, the surgery never slipped from my mind. I thought about it constantly. When Camden was on formula and baby foods, it would come out of his nose until he learned how to use his tongue to push it back without going through the big hole on the roof of his mouth. He also started with chronic ear infections, typical in babies and even more so in cleft effected kids. We started working with his ENT, Dr. Nicole Murray and decided he should have tubes placed prior to his palate repair. It wasn’t long before they were completely blocked and would have his tubes replaced during the palate surgery.

August 19, 2016 came and we felt comfortable bringing our 9 month old baby into the hospital for major surgery. I was confident in his care team. His anesthesiologist Dr. Cortland made us feel at ease by doing all he could to make sure our son would be safe under anesthesia. Four hours later, Alex and I got the call Camden made it through surgery. We were supposed to have one overnight stay but unfortunately Camden would not drink any fluids postop. He ended up staying inpatient for 4 days until they were comfortable with his fluid intake and home sweet home we went.

Camden was discharged with arm restraints (called no-no’s) so that he couldn’t put his hands anywhere near his nose or mouth. Little bit of a struggle at home keeping these on him, but day by day he coped. It was day 10 postop and I took Camden for an evening walk. Half way down the street his nose started bleeding out of the blue. I rushed home and called our pediatrician and the on-call surgeon. Both providers instructed that if the bleeding had subsided then all was fine, which it had. A few hours later at 8:30pm it was any parent’s worst nightmare. Camden started bleeding profusely from his mouth, nose and ears. He was crying, coughing and choking. I called 911 immediately and it felt like eternity before they arrived. We were rushed to the Connecticut Children’s emergency room and within minutes Camden was gray and nearly lifeless. A rush of medical providers came in and we were quickly moved to a large sterile room and Camden was hooked up to many different monitors and IV’s. They admitted him to the pediatric ICU (PICU) and he just laid in his crib, still. Since losing so much blood, he ended up having a blood transfusion. Once he became stable the next day, we were transferred to the inpatient floor (MS-7) where we met an incredible team of nurses.  Overcome with fear, emotions and concerns, Dr. Castiglione checked in daily to make sure our son was doing okay. The doctor said he had never seen this in all his years of practice. He said Camden threw a blood clot and because it’s a raw surface, it bleeds a lot. Our floor nurse, Gwen Beaudoin, RN was so compassionate and made sure she did everything in her power to care for our baby and answered all our questions. If she didn’t have the answer, she went and found it. I still make it a point to see her when we come in for routine checkups. She had such a large impact during our hospital stay, we will never forget her.

Fast forward to almost a year later, Camden is thriving. I have taught him sign language which he uses very well. His speech and learning are incredible and grow more each day. We are still following up with Dr. Murray (ENT) because his chronic ear infections are still present. His third set of tubes were just placed this past May. We see the Craniofacial team annually now and we couldn’t be any prouder of our son, who has made tremendous progress during the last 12 months. His strength astounds me and for going through all of this, he is such a happy boy! Connecticut Children’s Medical Center is truly an amazing hospital. Our experience has been positive overall and we have built such a rapport throughout the last 2 years.

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