Neonatal Intensive Care Unit
A Parents' Story
Megan and Brandon Schoonmaker, Saugerties, NY
On May 22, 2008, Megan and Brandon Schoonmaker learned that they were expecting their first child. "It was the best day of our lives," says Brandon, 26. Five months later a sonogram determined that their baby girl likely had congenital diaphragmatic hernia (CDH), an opening in the diaphragm (the muscle that separates the chest cavity from the abdominal cavity). This life-threatening abnormality is most commonly seen on the left side of the body but may also occur on the right side or the central portion of the diaphragm. Some organs that are normally found in the abdomen, including the intestines, move up into the chest cavity through this opening and prevent the lungs from growing and developing normally. The Schoonmakers' physician recommended the couple go to NewYork-Presbyterian Morgan Stanley Children's Hospital. Brandon describes what came next.
On October 16 at a hospital in Albany, doctors confirmed the diagnosis of CDH with a sonogram and a series of tests. A neonatologist there told us that they receive very few cases of CDH and that the physicians at Morgan Stanley Children's Hospital are experts -- literally, they have "written the book" on this illness. She suggested we go there.
We did our research on-line and looked up the surgeon, Dr. Keith Kuenzler. We saw videos, parent testimonials, and other procedures they've performed. We realized this was the place for us.
We were put in touch with the Center for Prenatal Pediatrics at Morgan Stanley Children's Hospital, and our first trip there was December 4. The baby was due approximately January 15th. Megan's new obstetrician, Dr. Kirsten Cleary, who specializes in maternal/fetal medicine, told us that they would pick a date 10 days before the due date to induce labor. At the same time, we were also meeting with the team that would take care of our baby's CDH.
On January 4, Megan was admitted to Morgan Stanley Children's Hospital. Two days later physicians performed a Cesarean section and Harleigh was delivered weighing 6 lbs. 10 ozs. She was immediately taken to the Transitional Nursery, soon to be admitted to the Neonatal Intensive Care Unit.
The staff was wonderful. They let us slip in and see her before Megan went to her room. We waited all day on Tuesday until late evening when Megan was able to get into a wheelchair to go up to the NICU and see the baby, who was in pod 702. That's when we could really sit with her and talk to her. Compared to some of the other babies in the NICU at 1, 2 and 3 pounds, she was Godzilla!
At this point the doctors had conducted a series of baseline tests on her... echocardiograms, X-rays, CT's, etc. Every doctor said the same thing. We wouldn't know what we were up against until she was born. Harleigh's surgery was planned for sometime in the next few days, but her lungs needed to be stabilized first.
By January 9, the doctors felt that they were ready to attempt the surgery to repair the hernia. The next day at 8 am they brought Harleigh down for surgery and four hours later she was in recovery. Waiting was very hard, very difficult. The nurses in the postpartum area were very nice. They understood what we were going through.
About 4:30 pm we were able to see Dr. Kuenzler, who told us that the CDH was much worse than they expected. They only expected a tiny hole in the left diaphragm based on the tests. But there was virtually no diaphragm. This allowed most of her stomach contents to go into her chest and prevented her left lung from inflating at all. They had to stitch a 4 x 6 cm patch to what little there was.
Dr. Kuenzler gave us a play by play of the surgery and we spent the rest of the day with Harleigh. Things progressed well until Tuesday when the doctors felt that it was time to extubate her. Unfortunately, that's where it got rocky for Harleigh. This is what caused us to stay in the NICU longer. Once they extubated her she was struggling to breathe. She had what they called retractions. They had to put the tube back in and they decided she probably needed more time. They did an X-ray to make sure the tube was in place, and the X-ray revealed that, unbelievably, she re-herniated and that would mean another surgery. We had to wait the rest of the week. The hole was very small, and the doctors felt that they had time to wait and plan for the next surgery.
One week later Harleigh underwent a second surgery to repair the CDH. This surgery was much shorter, much easier. Since then she's had no retractions, no re-herniations.
While Harleigh was in the NICU, the Schoonmakers stayed in an apartment in New York through Miracle House, a non-profit organization that provides temporary housing, meals, and advocacy to caregivers and patients coming to New York City for critical medical treatment. Each day they took the subway up to the Hospital to be with their daughter.
At that point Harleigh had been in the NICU about two weeks. We were getting to know some of the nurses and it was clear that we were going to go a little slower. The first person we got to know was Peter Fair, the charge nurse. He really took care of us. He's from our hometown actually. We had something to talk about aside from the NICU news. It was a nice distraction. He connected us to the family support group and the psychologist, Dr. Zina Steinberg. We found that to be such a pleasure.
At first I wasn't convinced the family support group would help. My wife is a very shy person, so I didn't expect her to even be interested, but she pushed it and said let's try it. We went the day before Harleigh's first surgery and it was great. We opened up with people we didn't even know. We heard other stories and eventually through Zina as a mediator, we learned of parents who had it much harder than we did. There were also parents who had it a little easier. It was a great way to vent.
Brandon goes on to describe their experience with the Hospital and NICU staff.
We knew that by going to Morgan Stanley Children's Hospital we were going to be getting the best staff and the best doctors. They did not disappoint. Dr. Kuenzler knows so much. He was so humble, and he really made us feel at ease.
The nurses were very knowledgeable and helped us feel better about the whole process. They told us what to expect. Not to mention their everyday care of the babies. They kept us involved in Harleigh's care. Changing her diaper...even with the medication process and nutrients. They encouraged us to ask questions. If they did not know the answer to a question we had -- and sometimes we didn't even have the smartest questions -- they were willing to find the answers and get the doctor in if necessary. They were there for us.
We were turned on to the idea of primary nursing. The charge nurse assigns selected nurses to your baby. We asked for a nurse that we really liked, Sylvia Morales, and we were told when we requested her that she had already put her own name in to take care of Harleigh. We loved to hear that and we had Sylvia 85 percent of the time. She knew what to say and how to make us feel better. In some way, she made Harleigh feel better. They are all amazing nurses, but Sylvia just had a special touch with Harleigh.
When Harleigh was ready to be discharged from the NICU seven weeks later, staff helped arrange for the appropriate healthcare services in the Schoonmakers' hometown of Saugerties so that Harleigh could be cared for at home.
Dr. Tove Rosen, our neonatologist, made it her mission to find a way to get us home. Even if Harleigh wasn't 100 percent, she would be able to come home on oxygen and a feeding tube. We arranged with the social worker, Rachel Kleinbart, for the healthcare. Rachel was so good to us -- she arranged for the nurse, the equipment, and she helped find funding from two different foundations to help defray the costs of our Miracle House bill. Thanks to Rachel, we were also put in touch with early intervention assistance for Harleigh, which was recommended by Dr. Rosen. She receives occupational, physical, and speech therapy, as well as help with feeding. It's going to be a long process, but she is doing well.
The people at Morgan Stanley Children's Hospital saved our baby's life. People say miracles can happen and that suggests some divine intervention. I'm religious enough to thank God for the help, but I'll be honest, it was Dr. Kuenzler, Rachel, Dr. Jane Lee, Dr. Rosen and Sylvia...they did the work. It truly was a team effort. The staff invited our input. In fact, the last week we were there, Dr. Kuenzler asked my wife if she thought the baby was ready to go home. They took us seriously.
