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01-23-2007, 10:00 PM
[left:4787714529]http://www.cherubs-cdh.org/Album/new/groce-kaleb2.jpg[/left:4787714529]Hi! I am from Timpson, Texas and have lost a son due to CDH. We were expecting Kaleb Matthew to be born the end of October 2002 healthy and well. That is until about 32 weeks when I began swelling terribly due to polyhydramnios. The doctor got worried about it and finally at 33 weeks, it was discovered that Kaleb had CDH. This is after the technicians at Memorial Hospital in Nacogdoches told me that the baby was healthy and that both lungs looked great.
After a week in Galveston, Texas my NST showed the baby's heart rate to be in the 190's. They immediately rushed me into surgery for an emergency caesarian section. When Kaleb was brought into this world, he actually cried twice. He was then taken to the NICU.
He was born at 11:22 a.m., October 3, 2002. He was doing fine until midnight that night when the doctors came in ad asked me to sign the papers to have him put on ECMO. I told them to do whatever they could to help him. Five and a half hours later they came in and said that fluid had built up around his heart and had caused it to stop beating on it's own. A drain tube was placed in his chest to drain the fluid.
For 4 days we hoped and prayed that this would help him to pull out of this. He was 7lbs., 20.8 inches at 36½ weeks and looked like the healthiest baby ever. On the 4th day, the doctors said they would do the tests over the next day but didn't expect to see a change. We called our families and pastor to come be with us the next day.
The next day, October 8th, the tests were done and deterioration was found in his little heart. He wasn't a candidate for a heart transplant because of the CDH and there was nothing else to be done. Slowly the machines were turned down and Matt and I sat and watched our little angel slip away. It was the hardest thing I have ever done to tell them to do it. Our 2½ year old son could not understand why he could not have his baby brother, but a kind lady in the waiting room explained it to him and also said the rain outside was Jesus' tears. All the nurses, doctors and technicians that were with him stayed right by our side through it all. They even cried right along with us. His doctor, Dr. McKinney wanted to do an autopsy to find out what happened because she believed he had a heart attack. We buried him on October 11th in Timpson, Texas. We later found out in the autopsy results that the ECMO had somehow bruised his heart but they said that without it he would have only had a 15% chance of survival. So it was necessary for the two surgeries he had to have. We had a wonderful 5 days with our son and truly miss him. The doctors, staff and everyone at UTMB was wonderful to us, as well as the people at the Ronald McDonald house and all the wonderful help we have received from CHERUBS. God Bless and God Keep!
Written by Kaleb's mom, Emily Groce (Texas)
2003
After a week in Galveston, Texas my NST showed the baby's heart rate to be in the 190's. They immediately rushed me into surgery for an emergency caesarian section. When Kaleb was brought into this world, he actually cried twice. He was then taken to the NICU.
He was born at 11:22 a.m., October 3, 2002. He was doing fine until midnight that night when the doctors came in ad asked me to sign the papers to have him put on ECMO. I told them to do whatever they could to help him. Five and a half hours later they came in and said that fluid had built up around his heart and had caused it to stop beating on it's own. A drain tube was placed in his chest to drain the fluid.
For 4 days we hoped and prayed that this would help him to pull out of this. He was 7lbs., 20.8 inches at 36½ weeks and looked like the healthiest baby ever. On the 4th day, the doctors said they would do the tests over the next day but didn't expect to see a change. We called our families and pastor to come be with us the next day.
The next day, October 8th, the tests were done and deterioration was found in his little heart. He wasn't a candidate for a heart transplant because of the CDH and there was nothing else to be done. Slowly the machines were turned down and Matt and I sat and watched our little angel slip away. It was the hardest thing I have ever done to tell them to do it. Our 2½ year old son could not understand why he could not have his baby brother, but a kind lady in the waiting room explained it to him and also said the rain outside was Jesus' tears. All the nurses, doctors and technicians that were with him stayed right by our side through it all. They even cried right along with us. His doctor, Dr. McKinney wanted to do an autopsy to find out what happened because she believed he had a heart attack. We buried him on October 11th in Timpson, Texas. We later found out in the autopsy results that the ECMO had somehow bruised his heart but they said that without it he would have only had a 15% chance of survival. So it was necessary for the two surgeries he had to have. We had a wonderful 5 days with our son and truly miss him. The doctors, staff and everyone at UTMB was wonderful to us, as well as the people at the Ronald McDonald house and all the wonderful help we have received from CHERUBS. God Bless and God Keep!
Written by Kaleb's mom, Emily Groce (Texas)
2003