Dear Mr. Sparks,
Ben was born 4 weeks early on October 4, 2001, after about 17 hours of labor. We were able to hold him and pose for a family photo with his big brother before they took him to the NICU for a closer look because he wasn’t crying and was having a little trouble breathing. Our older son, Sam, had been in the NICU, too; he was 5 weeks early and had trouble maintaining his body temperature, so we weren’t too concerned. However, after an hour or so, the NICU doctor came up to tell us the bad news: Ben had a left-sided diaphragmatic hernia; his spleen and intestines were in his chest cavity; his left lung was compressed; and, his heart was pushed to the right. He was put on pain medication, a sedative and a ventilator right away, and would need surgery to repair the hole and put everything back in place.
We were stunned and surprised. My pregnancy had been relatively uneventful, although I had had some unexplained pain late in the pregnancy and had measured big consistently. I had two Level II ultrasounds (one only 4 weeks before he was born), an amniocentesis and nothing was ever found to be wrong.
When Ben was one-day-old, the doctors discovered he also had Persistent Pulmonary Hypertension, and another medication was added to the mix. We were not allowed to hold him, or even touch him; when we did – his blood pressure skyrocketed and his oxygen saturation level went down. At 4 days, his hernia was repaired. The surgeon performed it laproscopically, since that would give Ben smaller scars and would also avoid having the doctor actually touch the small bowel, which could cause small bowel obstructions later in life. Ben was one of the youngest babies in the country to have this done laproscopically.
The surgery went well, but took a long time -- almost 4 hours! Afterwards, the surgeon told us that things had gone well, but that he had had to make a slightly larger incision at the end to get the spleen back in place. We went home that day relieved, sure that now that all of Ben’s parts were back in the right places, he would recover quickly and come home to us. We were wrong. His saturation levels continued going down, and he was put on an oscillating ventilator. It was very upsetting to come in that day and see his little body vibrating on the warmer. Then they tried nitric oxide. That also didn’t really help and we spent a very long night at the hospital waiting for the results of hourly blood gases.
When Ben was 6 days old, they told us that he might need ECMO because his saturations continued to be low, so he would need to be transferred to Children’s National Medical Center, a children’s hospital in Washington, D.C. We were devastated to think he might need to go on ECMO, which we had thought of as a last resort. We were also scared because the hospital was in D.C. and this was right after the terrorist attacks of September 11. But off Ben went in the ambulance. We met him there later and the NICU fellow told us Ben was “marginal.”
Thank God for the doctors and nurses at Children’s. They nurtured our family through our ordeal. The doctors answered all of our questions until we understood the answers (and we asked a lot of questions, over and over again). The nurses took great care of Ben, dressing his bed with cute baby blankets, making cards for us, and encouraging us to bring in pieces of home for Ben.
He did need to go on ECMO at 10 days old. The doctors told us Ben had a 50% to 60% chance of surviving – better than even odds, but not high enough to bring much comfort at the start.
For the first day or two, the doctors had trouble getting the cannulas in Ben’s neck positioned correctly, and we worried that the treatment wasn’t going to work. We sat at his bedside day after day, talking and singing to him and willing him to live. We made cassette tapes of ourselves reading stories with our older son and of our older son singing and talking, and the nurses played them next to his bed when we couldn’t be there. Our older son, Sam, bought him Speckles the hippo, a special bed-friend to keep him from getting scared at night. I pumped breast-milk every 4 hours and froze it. I produced so much milk that the hospital told me to stop bringing it in; I had used up my allotted space in the deep freezer. So, I started storing it at friends’ houses. I kept pumping, even though Ben couldn’t yet drink the milk, as a sign of faith that one day soon he would use it.
We found it was essential to develop a good routine for going to the hospital and for coming home; our other son needed his parents too, and we needed time away from the hospital to help preserve our physical and emotional strength. We depended heavily on friends and family to watch Sam, to clean our house, to prepare us meals, and to give us moral support throughout our ordeal.
We cried a lot, and we comforted each other. My husband and I had different ways of coping with the worry and the stress and we found it was important to use whatever coping tools we could find. It was so hard to remain hopeful at times, but we knew we couldn’t give up on Ben. Perhaps the hardest time we can remember was during a discussion with the hospital counselor about what might lie in store for Ben. We needed to know that the doctors wouldn’t give up on Ben before he had every chance to recover and get well. The counselor assured us that they would keep working with Ben as long as we wanted them to, but she also told us to always try to keep in mind what would be best for Ben – that there might come a time when we wouldn’t want to ask Ben to continue on. That was a scary thought, but also an enlightening one. It refocused our attention on our son and what was best for him and not just on how his predicament made us feel.
As Ben slowly made progress, they reduced the flow and then the saturation levels until, after 11 days, he was ready to come off ECMO. But the doctors warned us that progress would be fitful, and 5 days after coming off ECMO, Ben developed chylothorax – a leakage of fluid from the lymphatic system that gathered in his left chest cavity and collapsed his left lung. He had to have a chest tube put in to drain the fluid, so we still were not able to hold or feed him.
Finally, after 33 days, Ben’s saturation levels were good enough that we could take him off the ventilator and move him to a CPAP – and we were able to hear him cry for the first time! When I called that night to check on him, the nurse held the phone up to his crib and said, “Do you hear him? That’s your baby crying.” Never, ever, has a baby’s cry sounded so good! The next day, Ben’s chest tube came out. I got to hold Ben for the first time since his birth and my husband got to hold him for the first time ever. From then on, we pretty much held him constantly when we were at the hospital. We tried feeding him with a bottle at 37 days, but his blood pressure skyrocketed and he had a lot of spit-ups, so we backed off. An upper GI and a renal ultrasound both showed nothing wrong, so we continued to hope and pray that he would continue improving.
At this point, we were pretty sure he would be okay, but we kept running into roadblocks that slowed down his homecoming. T his was hard to bear; we kept getting our hopes up for a Christmas homecoming and then some other problem would crop up that would make reaching that goal uncertain. A week and a half later, we restarted Ben’s feeds through an NG tube in his nose. It was slow going; he had a hard time digesting the breast milk, and after 3 hours, he still had a lot of residue in his stomach. Still, he was moved into a real crib from the warmer and that helped improve our spirits. At 47 days, he was taken off the nasal cannula and was able, finally, to breathe on his own! Two days later, it was Thanksgiving and Ben started really drinking his bottles – 9 cc’s in 2 hours was a huge victory for Ben and for us – and he started smiling at us.
At a little over 7 weeks, Ben was moved back to Fairfax Hospital, where he was born, to continue learning to eat. A day later, he breastfed for the first time. Two weeks later, he came home.
Since coming home, Ben has had only one scary cold when we had to go to the doctor’s in the middle of the night for Albuterol and oxygen. He has reflux, and is on Zantac and Reglan to help with that. I can tell that he really needs it, too, because when he gains too much weight for his dosage, he starts regurgitating a little and sounds very slushy. Because of some early delay in gross motor skills, a physical therapist had been visiting Ben once a month or so, but Ben long ago seemed to recover any ground he lost to those first few difficult months. At 11 months, Ben was dismissed from physical therapy because he had already reached his 13-month milestones.
A friend asked me recently if Ben is really fine. I was happy to tell him that yes, he really is fine! He is a normal little boy who giggles at his brother’s antics and loves to be out and about. He has a huge smile that melts your heart; he tries to eat everything he finds on the floor, and tries to climb on everything. In other words, he’s totally normal, except for his souvenir scars. And every time we see those scars on his chest and that long scar on his neck that marks him as a CDH survivor, it reminds us of how precious life is and how lucky we are to have this beautiful boy with us.
Written by Benjamin's parents, Patty Tuttle-Newby and Darek Newby (Virginia)
Ben was born 4 weeks early on October 4, 2001, after about 17 hours of labor. We were able to hold him and pose for a family photo with his big brother before they took him to the NICU for a closer look because he wasn’t crying and was having a little trouble breathing. Our older son, Sam, had been in the NICU, too; he was 5 weeks early and had trouble maintaining his body temperature, so we weren’t too concerned. However, after an hour or so, the NICU doctor came up to tell us the bad news: Ben had a left-sided diaphragmatic hernia; his spleen and intestines were in his chest cavity; his left lung was compressed; and, his heart was pushed to the right. He was put on pain medication, a sedative and a ventilator right away, and would need surgery to repair the hole and put everything back in place.
We were stunned and surprised. My pregnancy had been relatively uneventful, although I had had some unexplained pain late in the pregnancy and had measured big consistently. I had two Level II ultrasounds (one only 4 weeks before he was born), an amniocentesis and nothing was ever found to be wrong.
When Ben was one-day-old, the doctors discovered he also had Persistent Pulmonary Hypertension, and another medication was added to the mix. We were not allowed to hold him, or even touch him; when we did – his blood pressure skyrocketed and his oxygen saturation level went down. At 4 days, his hernia was repaired. The surgeon performed it laproscopically, since that would give Ben smaller scars and would also avoid having the doctor actually touch the small bowel, which could cause small bowel obstructions later in life. Ben was one of the youngest babies in the country to have this done laproscopically.
The surgery went well, but took a long time -- almost 4 hours! Afterwards, the surgeon told us that things had gone well, but that he had had to make a slightly larger incision at the end to get the spleen back in place. We went home that day relieved, sure that now that all of Ben’s parts were back in the right places, he would recover quickly and come home to us. We were wrong. His saturation levels continued going down, and he was put on an oscillating ventilator. It was very upsetting to come in that day and see his little body vibrating on the warmer. Then they tried nitric oxide. That also didn’t really help and we spent a very long night at the hospital waiting for the results of hourly blood gases.
When Ben was 6 days old, they told us that he might need ECMO because his saturations continued to be low, so he would need to be transferred to Children’s National Medical Center, a children’s hospital in Washington, D.C. We were devastated to think he might need to go on ECMO, which we had thought of as a last resort. We were also scared because the hospital was in D.C. and this was right after the terrorist attacks of September 11. But off Ben went in the ambulance. We met him there later and the NICU fellow told us Ben was “marginal.”
Thank God for the doctors and nurses at Children’s. They nurtured our family through our ordeal. The doctors answered all of our questions until we understood the answers (and we asked a lot of questions, over and over again). The nurses took great care of Ben, dressing his bed with cute baby blankets, making cards for us, and encouraging us to bring in pieces of home for Ben.
He did need to go on ECMO at 10 days old. The doctors told us Ben had a 50% to 60% chance of surviving – better than even odds, but not high enough to bring much comfort at the start.
For the first day or two, the doctors had trouble getting the cannulas in Ben’s neck positioned correctly, and we worried that the treatment wasn’t going to work. We sat at his bedside day after day, talking and singing to him and willing him to live. We made cassette tapes of ourselves reading stories with our older son and of our older son singing and talking, and the nurses played them next to his bed when we couldn’t be there. Our older son, Sam, bought him Speckles the hippo, a special bed-friend to keep him from getting scared at night. I pumped breast-milk every 4 hours and froze it. I produced so much milk that the hospital told me to stop bringing it in; I had used up my allotted space in the deep freezer. So, I started storing it at friends’ houses. I kept pumping, even though Ben couldn’t yet drink the milk, as a sign of faith that one day soon he would use it.
We found it was essential to develop a good routine for going to the hospital and for coming home; our other son needed his parents too, and we needed time away from the hospital to help preserve our physical and emotional strength. We depended heavily on friends and family to watch Sam, to clean our house, to prepare us meals, and to give us moral support throughout our ordeal.
We cried a lot, and we comforted each other. My husband and I had different ways of coping with the worry and the stress and we found it was important to use whatever coping tools we could find. It was so hard to remain hopeful at times, but we knew we couldn’t give up on Ben. Perhaps the hardest time we can remember was during a discussion with the hospital counselor about what might lie in store for Ben. We needed to know that the doctors wouldn’t give up on Ben before he had every chance to recover and get well. The counselor assured us that they would keep working with Ben as long as we wanted them to, but she also told us to always try to keep in mind what would be best for Ben – that there might come a time when we wouldn’t want to ask Ben to continue on. That was a scary thought, but also an enlightening one. It refocused our attention on our son and what was best for him and not just on how his predicament made us feel.
As Ben slowly made progress, they reduced the flow and then the saturation levels until, after 11 days, he was ready to come off ECMO. But the doctors warned us that progress would be fitful, and 5 days after coming off ECMO, Ben developed chylothorax – a leakage of fluid from the lymphatic system that gathered in his left chest cavity and collapsed his left lung. He had to have a chest tube put in to drain the fluid, so we still were not able to hold or feed him.
Finally, after 33 days, Ben’s saturation levels were good enough that we could take him off the ventilator and move him to a CPAP – and we were able to hear him cry for the first time! When I called that night to check on him, the nurse held the phone up to his crib and said, “Do you hear him? That’s your baby crying.” Never, ever, has a baby’s cry sounded so good! The next day, Ben’s chest tube came out. I got to hold Ben for the first time since his birth and my husband got to hold him for the first time ever. From then on, we pretty much held him constantly when we were at the hospital. We tried feeding him with a bottle at 37 days, but his blood pressure skyrocketed and he had a lot of spit-ups, so we backed off. An upper GI and a renal ultrasound both showed nothing wrong, so we continued to hope and pray that he would continue improving.
At this point, we were pretty sure he would be okay, but we kept running into roadblocks that slowed down his homecoming. T his was hard to bear; we kept getting our hopes up for a Christmas homecoming and then some other problem would crop up that would make reaching that goal uncertain. A week and a half later, we restarted Ben’s feeds through an NG tube in his nose. It was slow going; he had a hard time digesting the breast milk, and after 3 hours, he still had a lot of residue in his stomach. Still, he was moved into a real crib from the warmer and that helped improve our spirits. At 47 days, he was taken off the nasal cannula and was able, finally, to breathe on his own! Two days later, it was Thanksgiving and Ben started really drinking his bottles – 9 cc’s in 2 hours was a huge victory for Ben and for us – and he started smiling at us.
At a little over 7 weeks, Ben was moved back to Fairfax Hospital, where he was born, to continue learning to eat. A day later, he breastfed for the first time. Two weeks later, he came home.
Since coming home, Ben has had only one scary cold when we had to go to the doctor’s in the middle of the night for Albuterol and oxygen. He has reflux, and is on Zantac and Reglan to help with that. I can tell that he really needs it, too, because when he gains too much weight for his dosage, he starts regurgitating a little and sounds very slushy. Because of some early delay in gross motor skills, a physical therapist had been visiting Ben once a month or so, but Ben long ago seemed to recover any ground he lost to those first few difficult months. At 11 months, Ben was dismissed from physical therapy because he had already reached his 13-month milestones.
A friend asked me recently if Ben is really fine. I was happy to tell him that yes, he really is fine! He is a normal little boy who giggles at his brother’s antics and loves to be out and about. He has a huge smile that melts your heart; he tries to eat everything he finds on the floor, and tries to climb on everything. In other words, he’s totally normal, except for his souvenir scars. And every time we see those scars on his chest and that long scar on his neck that marks him as a CDH survivor, it reminds us of how precious life is and how lucky we are to have this beautiful boy with us.
Written by Benjamin's parents, Patty Tuttle-Newby and Darek Newby (Virginia)
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