Dear Mr. Sparks,
I guess it all started in 1991 when we got married, we decided that we wanted our own home and at least two children. In 1992 we bought our own home and in April 1993 we had our first child, a healthy baby girl, Samantha. We waited a few years and decided that it was time for the next member of our family. In early 1997 we found out that we were pregnant, but after 12 weeks we lost our baby due to a miscarriage. We later decided to try again and it wasn't long before we were on the maternity road again. Our first ultrasound was scheduled for December 22, 1997 at the children's hospital in our province. We decided to have the ultrasound there because it is the only hospital that will allow all of your family in to see the initial ultrasound. We were all so excited to get a glimpse at the newest member of our family. Excitement soon turned to devastation. Obviously something was wrong. We ushered our little girl outside the door while the doctor described what a CDH was. The stomach had entered the chest on the left and forced the heart over to the right side. We were totally unfamiliar with CDH and to the best of our knowledge there was no chance of survival. The next day we had an emergency appointment with an obstetrician who deals with troubled pregnancies. The outlook did not look good. Our unborn child was given a 30% chance of survival. We were now given a choice of continuing with the pregnancy and hope for the best or to terminate. We met with a surgeon who successfully repaired a CDH three years earlier. Through him we met with the family of a beautiful three year old girl who suffered from CDH. The little girl is doing very well except for the fact that she is deaf and even that appears correctable. We decided to continue and give our unborn child any chance there was. The following months were very trying and full of uncertainty. Weekly ultrasounds and meetings with our GP were becoming second nature to us. An amniocentesis showed no other known abnormalities, but it did indicate that we should expect another daughter. Polyhydramnios was a major concern and it was suggested that some of the fluid be drained but that idea was dismissed as they felt it may induce premature labour. The main concern now was the transport of Sara from the maternity hospital, where she would be delivered, to the children's hospital, where the NICU is located. A 20 minute drive could be fatal for Sara. The doctors from the maternity hospital and the children's hospital got together and with the approval of their administrators it was decided that Sara would be delivered by C-Section at the children's hospital. She was to be the first child ever scheduled for delivery at this hospital. The date was set for May 11, 1998 and Sara would have a gestational age of 38 weeks.
May 11, 1998 we arrived at the children's hospital at 7:30 am and we were met by two nurses from the maternity hospital's labour & delivery unit. We all went to a private room designated for us. The room was complete with everything we needed, two beds, private washroom, telephone and television. The operating rooms and the NICU were both close by on the same floor as our room. It was almost 9:30 am and everyone was just about ready. A team of doctors and nurses from both hospitals were gathered in the OR. We were astonished to see the number of medical professionals waiting to see the safe delivery of our daughter and to provide her with the best of care that they could. At about 10:05 am Sara Hope was born, weighing in at 7lbs 15ozs with long black hair to her shoulders. We were filled with excitement when we heard her first cry. As any parent, we were overjoyed to see the little life that we had been waiting so long to see and hold. Our excitement and joy soon turned to fear and disbelief when we saw the team of doctors administering IV’s and respiratory equipment. Little Sara was rushed from the OR to the NICU which was only 50 feet down the hall.
We were taken back to our room after mom was taken care of, and a short time later the head nurse from the NICU came to the room with a photograph of what to expect. Sara was surrounded by numerous machines, wires and tubes. Prior to this we were told about what to expect, High Frequency Ventilators and the like, but we were not prepared for this. We were permitted to stay the night during which Sara's condition did not improve. Sara's blood sats were not stable. The upper body sats were acceptable but the lower body sats were not. The chief cardiologist did an ultrasound on Sara's heart and it appeared that her heart was still in the fetal mode, therefore not supplying her body with the needed oxygen. We (mom & dad) were to be transported back to the adult hospital in the morning but prior to leaving we had to see Sara. It was at this time that we were told that little could be done for Sara. At about 7:10am on May 12, 1998, Sara passed away in mom's arms. The ultrasounds had confirmed that not only the stomach but also a large portion of the intestine had moved into the chest cavity. The left lung had not developed at all or if it did it was restricted by the amount of abdominal organs in her chest. The right lung to the best of our recollection was only 30-40% developed and not able to sustain life. We spent 4 or 5 hours with our darling daughter after she died.
It was the only time we got to hold her. We never got to see her eyes or feel her when she moved. We never got the chance to enjoy the life that we waited so long for or to share with her the love we felt for her. She will always be in our hearts and always remembered for as long as we live. We have tried to console ourselves with the thought that she had an ultimate purpose. For years our health care organization separated the hospitals by the age of the patient. Adults were admitted to one hospital and children to another. Only the maternity hospital cared for both, but that was only for obstetric cases where the children were reasonably healthy. We hope that Sara opened some doors for other sick unborn children. We hope that she was a pioneer to a hospital where parents did not have to leave their sick children behind because of policies. Sara's life was short but we hope that it was meaningful. We will always miss our precious little daughter and we carry her memory everywhere we go. We pray that someday we will meet her again in a place much better than the one we live in now, a place where there is no suffering. We are sure that Sara knows how much we love her and miss her and that we can not regret giving her the chance we did. If only there was more we could have done. To all other parents and expecting parents of children with CDH the only thing we can say is to be strong, gather as much information as you can and be prepared for the best and the worst because only time will tell.
Sincerely,
Sara's Parents, Gail and Gene Lamkin (Canada)
I guess it all started in 1991 when we got married, we decided that we wanted our own home and at least two children. In 1992 we bought our own home and in April 1993 we had our first child, a healthy baby girl, Samantha. We waited a few years and decided that it was time for the next member of our family. In early 1997 we found out that we were pregnant, but after 12 weeks we lost our baby due to a miscarriage. We later decided to try again and it wasn't long before we were on the maternity road again. Our first ultrasound was scheduled for December 22, 1997 at the children's hospital in our province. We decided to have the ultrasound there because it is the only hospital that will allow all of your family in to see the initial ultrasound. We were all so excited to get a glimpse at the newest member of our family. Excitement soon turned to devastation. Obviously something was wrong. We ushered our little girl outside the door while the doctor described what a CDH was. The stomach had entered the chest on the left and forced the heart over to the right side. We were totally unfamiliar with CDH and to the best of our knowledge there was no chance of survival. The next day we had an emergency appointment with an obstetrician who deals with troubled pregnancies. The outlook did not look good. Our unborn child was given a 30% chance of survival. We were now given a choice of continuing with the pregnancy and hope for the best or to terminate. We met with a surgeon who successfully repaired a CDH three years earlier. Through him we met with the family of a beautiful three year old girl who suffered from CDH. The little girl is doing very well except for the fact that she is deaf and even that appears correctable. We decided to continue and give our unborn child any chance there was. The following months were very trying and full of uncertainty. Weekly ultrasounds and meetings with our GP were becoming second nature to us. An amniocentesis showed no other known abnormalities, but it did indicate that we should expect another daughter. Polyhydramnios was a major concern and it was suggested that some of the fluid be drained but that idea was dismissed as they felt it may induce premature labour. The main concern now was the transport of Sara from the maternity hospital, where she would be delivered, to the children's hospital, where the NICU is located. A 20 minute drive could be fatal for Sara. The doctors from the maternity hospital and the children's hospital got together and with the approval of their administrators it was decided that Sara would be delivered by C-Section at the children's hospital. She was to be the first child ever scheduled for delivery at this hospital. The date was set for May 11, 1998 and Sara would have a gestational age of 38 weeks.
May 11, 1998 we arrived at the children's hospital at 7:30 am and we were met by two nurses from the maternity hospital's labour & delivery unit. We all went to a private room designated for us. The room was complete with everything we needed, two beds, private washroom, telephone and television. The operating rooms and the NICU were both close by on the same floor as our room. It was almost 9:30 am and everyone was just about ready. A team of doctors and nurses from both hospitals were gathered in the OR. We were astonished to see the number of medical professionals waiting to see the safe delivery of our daughter and to provide her with the best of care that they could. At about 10:05 am Sara Hope was born, weighing in at 7lbs 15ozs with long black hair to her shoulders. We were filled with excitement when we heard her first cry. As any parent, we were overjoyed to see the little life that we had been waiting so long to see and hold. Our excitement and joy soon turned to fear and disbelief when we saw the team of doctors administering IV’s and respiratory equipment. Little Sara was rushed from the OR to the NICU which was only 50 feet down the hall.
We were taken back to our room after mom was taken care of, and a short time later the head nurse from the NICU came to the room with a photograph of what to expect. Sara was surrounded by numerous machines, wires and tubes. Prior to this we were told about what to expect, High Frequency Ventilators and the like, but we were not prepared for this. We were permitted to stay the night during which Sara's condition did not improve. Sara's blood sats were not stable. The upper body sats were acceptable but the lower body sats were not. The chief cardiologist did an ultrasound on Sara's heart and it appeared that her heart was still in the fetal mode, therefore not supplying her body with the needed oxygen. We (mom & dad) were to be transported back to the adult hospital in the morning but prior to leaving we had to see Sara. It was at this time that we were told that little could be done for Sara. At about 7:10am on May 12, 1998, Sara passed away in mom's arms. The ultrasounds had confirmed that not only the stomach but also a large portion of the intestine had moved into the chest cavity. The left lung had not developed at all or if it did it was restricted by the amount of abdominal organs in her chest. The right lung to the best of our recollection was only 30-40% developed and not able to sustain life. We spent 4 or 5 hours with our darling daughter after she died.
It was the only time we got to hold her. We never got to see her eyes or feel her when she moved. We never got the chance to enjoy the life that we waited so long for or to share with her the love we felt for her. She will always be in our hearts and always remembered for as long as we live. We have tried to console ourselves with the thought that she had an ultimate purpose. For years our health care organization separated the hospitals by the age of the patient. Adults were admitted to one hospital and children to another. Only the maternity hospital cared for both, but that was only for obstetric cases where the children were reasonably healthy. We hope that Sara opened some doors for other sick unborn children. We hope that she was a pioneer to a hospital where parents did not have to leave their sick children behind because of policies. Sara's life was short but we hope that it was meaningful. We will always miss our precious little daughter and we carry her memory everywhere we go. We pray that someday we will meet her again in a place much better than the one we live in now, a place where there is no suffering. We are sure that Sara knows how much we love her and miss her and that we can not regret giving her the chance we did. If only there was more we could have done. To all other parents and expecting parents of children with CDH the only thing we can say is to be strong, gather as much information as you can and be prepared for the best and the worst because only time will tell.
Sincerely,
Sara's Parents, Gail and Gene Lamkin (Canada)
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