VanderSchaaf, Ryan Michael

Some wishes do come true. Recently I was wishing that there was a support group for CDH, because I desperately need someone to relate to. I am grateful to one of the neonatologists from our Children's Hospital for passing your newsletter along to me. I found the newsletter to be informative and enjoyed the stories of CHERUBS. For me, the stress of our baby's early hospitalization and the dramatic fluctuations in stability effected my ability to understand complex information and unfamiliar terms. I wished I could see something written down about this condition to help with advocacy and decision making. The experiences we have had with the birth and after care of our latest child are extraordinary to most people. To us it is merely reality. The desire to come together with other parents who share the common bond of having a child with CDH is strong. Perhaps someone who is walking ahead of us on this path, and has gone through oxygen, gastrostomy tubes, feeding problems and fear of the future. The birth of our first child was a traumatic cesarean, so this time we wanted sedate surroundings for the VBAC (Vaginal Birth After Cesarean) of our second child. Our desire was to have this birth at a stand-alone birth center attended by certified nurse midwives. Instead, my bag of waters broke at 34 weeks, so we would be going to the back up hospital and be attended by one of the doctors from the birth center. Tests on the amniotic fluid said lung development was minimal and with ultrasound, it was determined that our baby had right side CDH. The baby had to be born for anyone to determine the severity of the CDH. Surgery to repair the hernia was recommended unless the baby was too unstable, and then ECMO was a possibility. this scenario was so diametrically opposed to our original intentions that it was mind boggling. Since the baby was six weeks early and my labor had stalled, it was recommended that the baby remain in utero for approximately one week to encourage further lung development. With the luxury of time, we made choices about what level of intervention, if any, we felt was appropriate for our family. We decided to have a normal vaginal birth when I went back into spontaneous labor. This was because the baby would be stimulated by the journey through the birth canal and the baby's lungs would be cleared of fluid, thus maximizing whatever lung development the CDH had allowed. Then, we agreed to intubation at birth followed by a chest x-ray to evaluate the degrees of the condition or conditions. We had been reading about ECMO and though a lifesaving device it has risks associated with its use. We hoped it would not come up for serious discussion in our baby's case. We felt that what ever was done to save our baby could exact life long costs and did not want to be blind to the quality of life that would result for our baby and our family. Also, we did not want to know the sex of the baby until birth to retain at least one small, yet precious, surprise. Ten days later, on April 22, 1995, contractions began again, and after many hours of labor and no drugs or interventions Ryan was born. He was alert and looking around. He was immediately intubated and stabilized. I got a moment to see and touch him, and then he was whisked next door to Children's Hospital. When his hernia was repaired he was found to have a right lung that was sequestered, (it had grown to the liver including its vascular structure, and would not have worked), so it was COMPLETELY removed. Fortunately for Ryan ECMO was not necessary. While in NICU for the initial ten weeks, Ryan was also found to have hydrocephalus of unknown origin. He has since received a shunt. In addition, he has two hemi vertebrae which will put him at greater risk for scoliosis. He had problems with reflux and aspiration, and to handle this he received a Nissen Fundoplication. During this surgery a G-tube was placed to help with feedings. I had taken for granted that I would nurse this baby and never thought I would be using a breast pump. I miss that he is not nursing, but I know he is healthier for receiving the milk I continue to pump for him. We have had some ups and downs, and a few nights back in the hospital, but progress also. He continues to gain weight and is recently off of oxygen and doing well. For Ryan, feeding orally again is the next area of focus, but like all else, it will be at his pace. He knows himself best. I feel we are blessed, because, as I write this, Ryan reclines in his bouncer seat kicking his legs, cooing and smiling. It is precious and I hope his future is as bright as this moment.

Written by Ryan's mom, Frances VanderSchaaf (California)
1996
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