Saturday, December 26, 2015

December 26 - Dear Nicholas Sparks (Guest Blogger Nancy Kowalski)

Dear Mr. Sparks,

I was pregnant with my second child in the summer of 1985. The movie E.T. had just been released to video and there was a resurgence of E.T. dolls and toys, much like this year with the movie’s release. My husband and I were on the boardwalk at the Jersey Shore, and he won one of those E.T. dolls on a chance wheel and gave it to me. Suddenly, the strangest feeling came over me, and I could not look at or hold that doll. My husband laughed, but I said it made me think of a deformed fetus, and being pregnant, I found that very disturbing.

My son, William, was born in November of 1985, with a congenital diaphragmatic hernia. It was not diagnosed during the pregnancy. In 1985, ultrasounds were not done routinely on healthy low risk 27-year-olds. I still believe that on some subconscious, sixth sense kind of level, I knew something was not quite right with this baby that summer.

I found the CHERUBS web site only this year, while searching for some information on scoliosis in kids who had this CDH defect. I found little, but as I read the stories of all the parents and children here, tears filled my eyes and still do, even as I recall sixteen years later the birth of my son.

William was born by Cesarean section at a community hospital in Northern N.J., where we live. The obstetrician did the C-section for fetal distress, as they were having difficulty with the fetal heartbeat on the monitor. Because it was a C-section, my pediatrician was present. As the baby was removed, there was no cry, and the pediatrician took him to the table to examine him. He was able to get air into my son, but my son would not breathe on his own. Minutes later, an X ray was done. As I was in recovery, the obstetrician came to tell me that my son had a congenital diaphragmatic hernia. He briefly described this defect to me. I, as a pediatric nurse, had a good understanding of medical problems but had never heard of this. I asked if he was going to be okay. The doctor said he did not know. My pediatrician had called in a pediatric surgeon. The pediatrician was with my son the entire time, making sure he was getting air and oxygen to his brain.

The pediatric surgeon came to talk to me and my husband while I was still in the recovery room, and told me a team from Columbia Presbyterian in NYC was coming for my baby. The team from the NICU at Columbia arrived about an hour, maybe two, after my son was born. They brought him by so I could see him, and then whisked him away. My husband also left to go to Columbia with our son. I was given lots of medication and was quite snowed. I heard later that there was a traffic jam on the George Washington Bridge as they were crossing it.

Late that night, I got a phone call from my husband, Jim. He told me that Bill had made it through the surgery, but was still in critical condition. He had been talking with many of the team from Columbia and tried to fill me in on all the information, but we were both still numb with shock. I tried as hard as I could to talk in my medicated state, and I recall my mouth being so dry I could hardly form any words. We would talk again in the morning.

At that time, ECMO was considered still “experimental.” Dr. Charlie Stolar, one of the pioneers of ECMO, explained it all to us, and we had to sign a consent form that was about ten pages long in case of respiratory failure for which ECMO would be used. We did, but our son was not in need of it.

Of course, our story is very long, because our son is now sixteen years old, and we have had to face many obstacles along the way. We brought our son home in time for Christmas that year. He has had reflux and has not been a great eater. He has not required any feeding tubes but does still eat slowly, needs smaller more frequent meals (lots of snacks) and is smaller than his peers. He has had a total of five surgeries for things related to the CDH – once for adhesions, once for a rip in the original repair, once for a gallstone which was probably due to the TPN feedings, and for a pectus excavatum (concave chest) repair. Now we are facing scoliosis surgery, to take place this summer.

His most serious problem is the pulmonary hypoplasia. His lung function is at times poor, and he also has asthma, although the asthma has improved a lot over the past year or so. I still listen for his cough at night and still check him more often than I do my older daughter. We still see the pediatric pulmonologist at Columbia regularly. I asked him recently if he could just transplant one of my lungs to Bill. He said it could be done, but that Bill is not even close to needing that.

I remember the day we brought Billy home, in December 1985. The Director of Pediatrics sat down with us and asked us to talk about all we’d been through. Then he told us to take him home and love him just like any other kid. I also remember the morning after he was born, when I learned that he had lived through that first night, I decided that if he could go through all that then I had to do everything possible to give him the absolute best that I could. I started using the breast pump so that I could breastfeed, and I did for nine months.

We have been so very, very lucky to have Bill but also have had some very difficult mountains to climb. Somehow I thought that when I brought him home that first time, it was all okay and would be from then on. Of course, I was wrong. Over the past years I have come to accept that there will always be higher mountains with Bill, harder times, more worry and heartache. And, of course, he is so worth all of it.

I should say that Bill has a very typical teenage life. He is a sophomore in high school, an honor student, and wants to go into biomedical engineering. He is in the band, tried out for the fencing team but got cut. He bowls, builds things, plays video games with his buddies, and takes his little boat out on the lake in the summer. He argues with me all the time, especially about his independence, and tells me that I hold him back. He knows I worry about him. I know when he sleeps over at his friend’s house, the next day we will be using the nebulizer, and he’ll probably be coughing. I wake up in a near panic still when he coughs at night. I take him out for driving lessons. I worry about everything.

Of course, as all mothers of cherubs must know, every bit of heartache is so much more than worth it. Bill and I share a sense of humor and we watch movies together and his smile and laugh just make my life worth living.

I found this site as I was looking for information on scoliosis and CDH. Although my cherub is much older than most, I remember when he was a baby, it was so difficult for me to imagine the future – him as a teenager, going to high school, learning how to drive. I was always somehow afraid we might not see it.

Written by Bill's mom, Nancy Kowalski (New Jersey)

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