Benjamin Adam Walker was born October 2007 after an uneventful pregnancy, by planned c-section at thirty-eight weeks due to him being breech. Full term he weighed 3 lbs 11 oz and was in respiratory distress. Since it was a planned C-section there was a NICU nurse there who got him quickly to the NICU and on a ventilator.
Within an hour we were told his diagnosis. Left sided Congenital Diaphragmatic Hernia. We had never even heard the term before, and now our son was born with it. His liver was the only organ that was not in his chest. He struggled to breathe, as the Drs struggled to stabilize him, his blood gases were very high, over double what would be considered safe to operate. When he was 36 hours old, we were told that there was no more they could do at this hospital and he needed to be flown to CHoP where they had an ECMO machine, and that would help stabilize him and give him a chance to have the surgery. There was a bed available for him, and they were arranging for the helicopter to come and get him. We live about an hour and a half from Philadelphia, so we began making arrangements to get me checked out of the hospital and get ready to go.
Ben had other plans. They had to take one last blood gas to give the flight team the most current numbers. Those numbers came back almost half of what they had been, and the surgeon felt confident he would be better off staying where he was and having his repair surgery there. So we stayed.
The next day, he had the surgery and we were cautioned that he was not out of the woods, and that he still had a long road ahead. In the NICU he needed 3 blood transfusions, dozens of x-rays, 2 weeks on a vent, 2 weeks on cpap, a week with a nasal canula, IV feeding, NG tube, a chest tube, MRI’s and countless other tests and procedures. We were able to hold him at 12 days old, and we did as often as we could.
He struggled, but made good progress, and was eating out of a bottle by 5 weeks old. He spent 6 weeks in the NICU and went home on only an apnea monitor, and a calendar full of Dr appts. His left lung did not form correctly and he had a difficult time fighting germs, so his first year he had limited contact with other people. He needed to be followed by a pulmonologist, optamologist, his surgeon, a neurologist, a cardiologist and of course his pediatrician.
For the first 10 months he did fairly well, though he remained small and growing slowly. By 10 months he had completely fallen off of his growth curve, and we started seeing a Pedi GI. By 13 months, he was diagnosed Failure to Thrive (a diagnosis that just about crushed me), severe food allergies, Reflux, and Eosinophilic Eoshphagitis. He was placed on an elimination diet in which he was only allowed 4 foods. Chicken, sweet potato, prunes, and barley. Elecare was and is his main source of nutrition. He had a difficult time feeding and vomited upwards of 12 times a day, everyday. By the he was 19 months old he was admitted for placement of an NG tube, and he had that for 5 months. He began to grow, and he even started to get hair! He however, still was vomiting all the time and could not eat anything beyond Elecare.
We saw several GI drs, and they all said the same thing. He has allergies, EE, and Reflux. The vomiting is fine. They prescribed zantac over and over. It didn’t help and I stopped filling the rx. At 2 ½ he was admitted for placement of a G-tube, repair of an umbillical hernia as well as surgery to move his testicles down, as they were too high.
Within a day of the surgery he got very sick. He had a thick tube placed in his nose and down his throat, and that and the G-tube were used to drain green billious from him constantly. After 2 days of him getting sicker, he had a bowel test and it showed a complete intestinal block. It was 10pm by the time we got the results and the surgeon said the surgery had to be done NOW, so he went into Emergency surgery late that night.
We were warned just how serious it was and he may lose part or all of his intestines. The surgeon that performed the surgery was the same that did his orginal CDH repair. The block was from his intestines adhering to his synthetic diaphragm and slowly cutting it off. The surgeon said the biggest indicator we would have had to a problem was he would have had intense constant vomiting.
HE DID. I TOLD EVERYBODY. NOBODY LISTENED.
He suffered for a year and a half, he almost lost his intestines and he almost died because every doctor we saw was quick to say he vomits because he had reflux.
After that surgery he did well for a few days, but then again became very sick. His incision was red and swollen and obviously infected. By this time his surgeon had left the country on a mission trip and there was no covering pediatric surgeon. The only other in the county was at a hospital about 10 miles away, so after 10 days in the first hospital he was transferred by ambulance.
He needed ANOTHER surgery to open the incision, clean it, pack it and get antibiotics in. He was in that hospital for another 3 weeks, and was put under daily for the first week, and every other day after that to clean the wound and repack it. He spent all of that time on round the clock antibiotics to get the infection under control.
The would was left open to heal and we cleaned it at home and kept it covered, and him away from other people again for another 2 months so he could recover at home. It took 3 full months for his body to heal from that ordeal on the outside and much longer for him to get past it, though I think he will always carry part of that trauma with him. To this day I can not take him to the dr without giving him a complete run down of what is going to happen, why we are going, and what we are going to talk about.
Today he is a relatively healthy 4 ½ year old who keeps us laughing, keeps us busy and makes us grateful for everyday we get. He still suffers from food allergies and EE, so there are not many foods he can have, and he will likely always depend on Elecare to thrive, but he is THRIVING. He is now on the growth charts (at the bottom, but on there!) He needs 2 to 4 breathing treatments a day, is on several medications for the EE, reflux and seasonal allergies and is G-tube fed at night to help him get the calories he can’t take by mouth. He drinks the Elecare well but simply can not get enough in by mouth to grow.
His lungs are still fragile, and it takes him weeks to get over a “simple cold”. Some days are great Some days are incredibly hard, and we live with the constant fear that his patch could break, but we pray daily it does not happen.