Dear Mr. Sparks,
I was having a pretty "normal" pregnancy with no problems initially. My
AFP test had come back with an elevated risk of Downs so it was
recommended that I have an amnio. I was 32 so I wasn't going to
automatically have one but I opted to do it due to the result of the
AFP. (When I was pregnant with my daughter three years prior, I had the
same thing happen so I just thought, "here we go again.") My amnio was
normal and the detailed ultrasound they did prior to it and during it
revealed no abnormalities. I was very relieved and happy I was carrying
a healthy baby, so my pregnancy proceeded with me feeling very well. I
knew I was carrying a boy and my husband and I felt very lucky and were
trying to prepare our two-year-old daughter for the arrival of her
little brother.
About a week before Christmas, I was 31 weeks by then, I went in for my normal checkup and the doctor measured the height of my uterus. He said I was measuring 35 weeks along and that he wanted to do an ultrasound. I told him that my first baby was big and that I wanted one done at 38 weeks so I could decide if I wanted another cesarean. He said I could have one then, but he wanted one now. (Thank God for him. This was the first step to saving my baby's life)
My husband and I went in a few days later. The ultrasound revealed what was initially believed to be a problem with the heart. Our baby's heart was shoved way to the left of his chest. We were devastated and when we saw my OB, she gave me a big hug and said that she didn't know what was wrong with the baby, but she was going to send us to specialists and that she was going to do everything to help our baby.
It took a couple of visits with level 2 ultrasounds to narrow the problem down. The doctor couldn't get a good picture of the baby and it was either a type of mass in the chest, or a diaphragmatic hernia. (Initially they thought there might be something wrong with the structure of the heart, but it was because the heart was being smashed up against the wall of the chest.) The doctor recommended to deliver at a hospital that has ECMO and explained to us why. He gave us a couple of options, the closest of which was Gainesville, FL (we live in Jacksonville) He had also mentioned the in-utero surgery they do in San Francisco but we did not like the success rate percentage.
We met with the OB specialist who did another ultrasound. He definitely could diagnose it as a diaphragmatic hernia. He said that it was right sided and the intestines were probably up there and most of the liver. We then met with Dr. David Kays who is one of the pediatric surgeons at Shands hospital and who also specializes and has done many repairs of CDH. He went through all of the scenarios that could take place. We all decided on a cesarean set for 39 weeks. I would be given two steroid shots starting two days prior to my cesarean.
All this time was devastating. I was trying to be cheerful over the holidays for my daughter's sake, plus I didn't think that crying 24 hours a day would be good for the baby, however, I couldn't control my emotions at night. I would pray and cry for hours every night until my pillow was soaked. The one thing the doctors were able to get across to me was the seriousness of this defect.
At my weekly visits and non-stress tests I would have at my OB's, I asked her what I should do if I go into labor and she had said to call and come right away and she would send me by helicopter if necessary to Gainesville. I laughed at the idea of me going by helicopter and even told my cousin to "pray my water doesn't break and I don't have to ride in some damn helicopter!" At 37 weeks, that's exactly what happened.
I was at my mom and dad's with my daughter and I started leaking amniotic fluid. I called my doctor and went to the office, which was located at Baptist hospital in Jacksonville. She verified I was in labor and called Dr. Kays' office in Gainesville. They asked her to give me a shot of Beta Meth and send me on my way. I was already dilated two centimeters, so she decided to get me there as quickly as possible.
My husband, mother, and daughter, were there and said they would meet me in Gainesville since nobody was able to ride with me. As soon as I was at Shands hospital, they set me up on a magnesium sulfate drip to slow the labor. Dr. Kays came in to talk to me and said they were going to hold me off for quite a while because I needed some time to pass and then another steroid shot. They had to put me on the maximum of the drip to finally get my labor to slow down.
The next day they were able to reduce it a little so I could be a little more comfortable. The doctors would check me minimally so as to not cause anymore dilating. I had been admitted on a Tuesday and on Thursday morning, I was in a lot of pain and felt like I had dilated more. They checked me and I was five centimeters and they said it could not be stopped now. Dr. Kays came in and said that they would do the cesarean at 11:30am and he would be in the delivery room ready to help my baby.
I had sent my family home since I didn't think I would be delivering this early and the only reason my husband agreed is so he could work more so that he could stay for a long time after the baby was born. I called him to come back to Shands but there was not much time before I was taken to the operating room.
When they lifted my baby out, I heard someone say, "Judy, look quickly!" I saw my son for a split second before they handed him to Dr. Kays' team. I'll never forget that big "waaaa" face with no sound coming out, except for a quick little noise that I can't explain, sort of like what it sounds like when someone gets the breath knocked out of them.
I looked over to the little bed where Ian was but I could not see because there were too many people around it working on Ian. The two anesthesiologists were talking to me to keep my mind off things and they would look over and then try to reassure me. I kept hearing someone call out each minute that passed, and knew things weren't going well. All this time I was praying as fast as I could and straining to see my son. At one point, one of the anesthesiologists went to look at Ian and then I saw him look at the other one and he was as white as a ghost. When four minutes had passed I still hadn't heard anything and then finally Dr. Kays came up to me and said that Ian was very serious but they finally got him stable enough and were taking him to NICU. After they took him out of the room, someone came to tell me that my husband just arrived and got to see Ian for a second, and that he would be waiting in the recovery room for me.
I was taken back to my room to recover from the surgery. After an hour or so, someone brought me a polaroid of my son. He was on a ventilator and almost his entire body was covered with wires and tubes. At two hours old, we were told we could go to see him. I sent my husband and my mother to go look at him and come back and tell me how he was. When they came back, I begged my recovery nurse to let me go to see. She helped me to the wheelchair and I was taken to see him. When I went in, Dr. Kays explained to me how serious Ian was. He said he went a long time without oxygen in the beginning because he was very hard to intubate. When I looked at Ian, the vent was working his body so hard that his chest was dramatically rising and falling. The nurse was there to answer any questions about all the wires or machines that we needed to ask. I couldn't stop crying every time I looked at him. He was so beautiful. He looked so much like our daughter when she was born. He was a good size (7lbs. 14oz) which the Dr. said was in our favor, and also that it seemed he had a strong heart. I would visit again and again. I couldn't stay away from him. It was like I was trying to engrave his face in my mind because I thought I would lose him. At about 3 o'clock in the morning, I went to see him again, and there I saw the surgeon, Dr. Kays, still by Ian's side. That is when I realized that we were in the best place we could be.
The next day, only 24 hours after he was born, Dr. Kays came to tell us that Ian was not doing well and that he had a small window of time to get his surgery done. He really didn't want Ian to go on ECMO without having done his repair yet, so he was going to do the surgery even though Ian was so marginal. He did Ian's surgery right in NICU because he was too unstable to move. Ian made it through the surgery. Dr. Kays said that 85% of his liver and almost all of his intestines were in his chest. He said that Ian basically had no diaphragm and he showed us the gortex that he used as a patch. He said it was the biggest patch he's ever had to do. The X-rays revealed that Ian's right lung was extremely small, about 30% of what it should have been, and his left lung was about 70% of what it should be. Dr. Kays said Ian's lung and liver were bruised somewhat because the vent was causing them to hit each other.
The next day, Ian's blood gases were so poor, he had to be put on ECMO. That was the .worst day of my life. Even though the ECMO program was the initial reason we went to Shands, I was hoping all along that it would not be needed. I was told that Ian's lungs had been worked too hard and ECMO allowed them to turn down the vent and give Ian's lungs a rest and that hopefully, his lungs would grow and expand with the room in his chest recently created by the repair surgery.
I can't explain ECMO. It was the worst sight I've ever seen. I thought seeing him with all the tubes, vent, and other stuff was bad, however it was nothing compared to this. A huge machine was parked right next to Ian's bed, with big fat tubes filled with blood going from the machine surgically attached to his jugular vein. The only redeeming quality was that for the first time, my son looked more peaceful because the vent had been turned down and it was not pumping his lungs like it had been. I could understand the concept of what ECMO could do for Ian. It would oxygenate his blood so his lungs could be given a rest and hopefully start to grow and work. I asked Dr. Kays how long he thought Ian would have to be on ECMO. He said given how sick Ian was, probably somewhere between 10 and 14 days.
Life on ECMO was extremely hard. Ian would have one good day, two bad. Then have two good days and one bad. At one point we were very encouraged because a blood gas showed more oxygen than what they were giving Ian, which meant his lungs were beginning to work. He had to go through two circuit changes (that's when they change out the whole machine with another one filled with all new blood.) They would have to do that because the blood in the machine would start to clot after about five days, which would be extremely dangerous. After both circuit changes, Ian would have a very bad day and a half, probably because it was a shock to his system. At about day 10, Dr. Kays tried a second attempt of trial off ECMO. That's when they fix the machine so they can see how Ian would do without it. Again, Ian's blood gases were too poor and he had to put him back on. Eventually, on day 16, it was time for another circuit change, but Dr. Kays had been preparing the machine, turning the flow down for a few days, hoping that this time Ian was going to do it. He made it off and the next time I went in, the machine was gone. The next nine days, Ian was slowly weaned off the vent. When he was 22 days old, I walked into NICU and Sandy, Ian's nurse, had him dressed in a little shirt and had washed his hair for the first time. She and Michele, the nurse practitioner, asked if I wanted to hold him. I had never asked any of the nurses when I would be able to hold him because I was afraid I would not like the answer, but mainly because I knew I wouldn't be able to ask the question without breaking down and crying. I would cry when I would see the other parents in NICU get to hold their babies because I so much needed to hold him.
They put an oxy-hood on him at first, then switched him to a nasal cannula. This is the first time I saw my baby's beautiful mouth. His cry was raspy and weak, but it was music to my ears. At this point, he started making progress in leaps and bounds. It was a continual positive progression from here. They did an upper GI to see how bad his reflux was going to be. The test showed minimal reflux. We started slowly introducing feeds by mouth. I had been pumping breast milk and when they first placed the NG tube, that was the first real food (not IV) he received.
Increasing the feeds by mouth was a painstaking process. Eventually I was able to breastfeed. Since breastfeeding is not an exact science, every day I anticipated when he would be weighed hoping for a nice gain. At the same time the nurses were teaching me how to give Ian his meds by mouth since I would be doing that once I took him home. After Dr Kays was satisfied with Ian's weight gain and progress, after 50 days in NICU, we were able to take Ian home.
He came home on portable oxygen by nasal cannula. I had a huge tank set up in his room and he had a 20 foot tube so I could walk around the house a little with him. He was also on a heart monitor constantly for the first few months and then just at night. He had to take many meds by mouth every day. Nifedipine he took initially because he had pulmonary hypertension, which he was off in a couple of months. He also took Cisapride, Pepcid, which helped with reflux, and Lasix. He remained on oxygen until his first birthday. In his first year and a half he was hospitalized three times for respiratory infections, none of which were RSV. As he gets older, he seems to get sick less often, and tolerates the viruses better.
Today, he is two years old, is saying six word sentences, runs and plays with his older sister, and is in the 50% for height and weight of normal children his age. Nobody can believe he was as sick as he was. He looks so healthy and is extremely active like any two year old.
Ian would not be here if it weren't for his surgeon, Dr. David Kays, who is a pioneer in changing the way babies with Congenital Diaphragmatic Hernia are treated. He has the best published diaphragmatic hernia data with a survival rate of 92% of babies that are born at Shands. He and the wonderful nurses and therapists provided Ian's little body with everything that it needed to grow and work and heal. We are so lucky we found our way to Shands.
We are so lucky in many ways, and knowing how different it could have been, makes us count our blessings every single day for our miracle baby.
Sincerely,
Ian's mom, Judy Bunch (Florida)
I was having a pretty "normal" pregnancy with no problems initially. My
AFP test had come back with an elevated risk of Downs so it was
recommended that I have an amnio. I was 32 so I wasn't going to
automatically have one but I opted to do it due to the result of the
AFP. (When I was pregnant with my daughter three years prior, I had the
same thing happen so I just thought, "here we go again.") My amnio was
normal and the detailed ultrasound they did prior to it and during it
revealed no abnormalities. I was very relieved and happy I was carrying
a healthy baby, so my pregnancy proceeded with me feeling very well. I
knew I was carrying a boy and my husband and I felt very lucky and were
trying to prepare our two-year-old daughter for the arrival of her
little brother. About a week before Christmas, I was 31 weeks by then, I went in for my normal checkup and the doctor measured the height of my uterus. He said I was measuring 35 weeks along and that he wanted to do an ultrasound. I told him that my first baby was big and that I wanted one done at 38 weeks so I could decide if I wanted another cesarean. He said I could have one then, but he wanted one now. (Thank God for him. This was the first step to saving my baby's life)
My husband and I went in a few days later. The ultrasound revealed what was initially believed to be a problem with the heart. Our baby's heart was shoved way to the left of his chest. We were devastated and when we saw my OB, she gave me a big hug and said that she didn't know what was wrong with the baby, but she was going to send us to specialists and that she was going to do everything to help our baby.
It took a couple of visits with level 2 ultrasounds to narrow the problem down. The doctor couldn't get a good picture of the baby and it was either a type of mass in the chest, or a diaphragmatic hernia. (Initially they thought there might be something wrong with the structure of the heart, but it was because the heart was being smashed up against the wall of the chest.) The doctor recommended to deliver at a hospital that has ECMO and explained to us why. He gave us a couple of options, the closest of which was Gainesville, FL (we live in Jacksonville) He had also mentioned the in-utero surgery they do in San Francisco but we did not like the success rate percentage.
We met with the OB specialist who did another ultrasound. He definitely could diagnose it as a diaphragmatic hernia. He said that it was right sided and the intestines were probably up there and most of the liver. We then met with Dr. David Kays who is one of the pediatric surgeons at Shands hospital and who also specializes and has done many repairs of CDH. He went through all of the scenarios that could take place. We all decided on a cesarean set for 39 weeks. I would be given two steroid shots starting two days prior to my cesarean.
All this time was devastating. I was trying to be cheerful over the holidays for my daughter's sake, plus I didn't think that crying 24 hours a day would be good for the baby, however, I couldn't control my emotions at night. I would pray and cry for hours every night until my pillow was soaked. The one thing the doctors were able to get across to me was the seriousness of this defect.
At my weekly visits and non-stress tests I would have at my OB's, I asked her what I should do if I go into labor and she had said to call and come right away and she would send me by helicopter if necessary to Gainesville. I laughed at the idea of me going by helicopter and even told my cousin to "pray my water doesn't break and I don't have to ride in some damn helicopter!" At 37 weeks, that's exactly what happened.
I was at my mom and dad's with my daughter and I started leaking amniotic fluid. I called my doctor and went to the office, which was located at Baptist hospital in Jacksonville. She verified I was in labor and called Dr. Kays' office in Gainesville. They asked her to give me a shot of Beta Meth and send me on my way. I was already dilated two centimeters, so she decided to get me there as quickly as possible.
My husband, mother, and daughter, were there and said they would meet me in Gainesville since nobody was able to ride with me. As soon as I was at Shands hospital, they set me up on a magnesium sulfate drip to slow the labor. Dr. Kays came in to talk to me and said they were going to hold me off for quite a while because I needed some time to pass and then another steroid shot. They had to put me on the maximum of the drip to finally get my labor to slow down.
The next day they were able to reduce it a little so I could be a little more comfortable. The doctors would check me minimally so as to not cause anymore dilating. I had been admitted on a Tuesday and on Thursday morning, I was in a lot of pain and felt like I had dilated more. They checked me and I was five centimeters and they said it could not be stopped now. Dr. Kays came in and said that they would do the cesarean at 11:30am and he would be in the delivery room ready to help my baby.
I had sent my family home since I didn't think I would be delivering this early and the only reason my husband agreed is so he could work more so that he could stay for a long time after the baby was born. I called him to come back to Shands but there was not much time before I was taken to the operating room.
When they lifted my baby out, I heard someone say, "Judy, look quickly!" I saw my son for a split second before they handed him to Dr. Kays' team. I'll never forget that big "waaaa" face with no sound coming out, except for a quick little noise that I can't explain, sort of like what it sounds like when someone gets the breath knocked out of them.
I looked over to the little bed where Ian was but I could not see because there were too many people around it working on Ian. The two anesthesiologists were talking to me to keep my mind off things and they would look over and then try to reassure me. I kept hearing someone call out each minute that passed, and knew things weren't going well. All this time I was praying as fast as I could and straining to see my son. At one point, one of the anesthesiologists went to look at Ian and then I saw him look at the other one and he was as white as a ghost. When four minutes had passed I still hadn't heard anything and then finally Dr. Kays came up to me and said that Ian was very serious but they finally got him stable enough and were taking him to NICU. After they took him out of the room, someone came to tell me that my husband just arrived and got to see Ian for a second, and that he would be waiting in the recovery room for me.
I was taken back to my room to recover from the surgery. After an hour or so, someone brought me a polaroid of my son. He was on a ventilator and almost his entire body was covered with wires and tubes. At two hours old, we were told we could go to see him. I sent my husband and my mother to go look at him and come back and tell me how he was. When they came back, I begged my recovery nurse to let me go to see. She helped me to the wheelchair and I was taken to see him. When I went in, Dr. Kays explained to me how serious Ian was. He said he went a long time without oxygen in the beginning because he was very hard to intubate. When I looked at Ian, the vent was working his body so hard that his chest was dramatically rising and falling. The nurse was there to answer any questions about all the wires or machines that we needed to ask. I couldn't stop crying every time I looked at him. He was so beautiful. He looked so much like our daughter when she was born. He was a good size (7lbs. 14oz) which the Dr. said was in our favor, and also that it seemed he had a strong heart. I would visit again and again. I couldn't stay away from him. It was like I was trying to engrave his face in my mind because I thought I would lose him. At about 3 o'clock in the morning, I went to see him again, and there I saw the surgeon, Dr. Kays, still by Ian's side. That is when I realized that we were in the best place we could be.
The next day, only 24 hours after he was born, Dr. Kays came to tell us that Ian was not doing well and that he had a small window of time to get his surgery done. He really didn't want Ian to go on ECMO without having done his repair yet, so he was going to do the surgery even though Ian was so marginal. He did Ian's surgery right in NICU because he was too unstable to move. Ian made it through the surgery. Dr. Kays said that 85% of his liver and almost all of his intestines were in his chest. He said that Ian basically had no diaphragm and he showed us the gortex that he used as a patch. He said it was the biggest patch he's ever had to do. The X-rays revealed that Ian's right lung was extremely small, about 30% of what it should have been, and his left lung was about 70% of what it should be. Dr. Kays said Ian's lung and liver were bruised somewhat because the vent was causing them to hit each other.
The next day, Ian's blood gases were so poor, he had to be put on ECMO. That was the .worst day of my life. Even though the ECMO program was the initial reason we went to Shands, I was hoping all along that it would not be needed. I was told that Ian's lungs had been worked too hard and ECMO allowed them to turn down the vent and give Ian's lungs a rest and that hopefully, his lungs would grow and expand with the room in his chest recently created by the repair surgery.
I can't explain ECMO. It was the worst sight I've ever seen. I thought seeing him with all the tubes, vent, and other stuff was bad, however it was nothing compared to this. A huge machine was parked right next to Ian's bed, with big fat tubes filled with blood going from the machine surgically attached to his jugular vein. The only redeeming quality was that for the first time, my son looked more peaceful because the vent had been turned down and it was not pumping his lungs like it had been. I could understand the concept of what ECMO could do for Ian. It would oxygenate his blood so his lungs could be given a rest and hopefully start to grow and work. I asked Dr. Kays how long he thought Ian would have to be on ECMO. He said given how sick Ian was, probably somewhere between 10 and 14 days.
Life on ECMO was extremely hard. Ian would have one good day, two bad. Then have two good days and one bad. At one point we were very encouraged because a blood gas showed more oxygen than what they were giving Ian, which meant his lungs were beginning to work. He had to go through two circuit changes (that's when they change out the whole machine with another one filled with all new blood.) They would have to do that because the blood in the machine would start to clot after about five days, which would be extremely dangerous. After both circuit changes, Ian would have a very bad day and a half, probably because it was a shock to his system. At about day 10, Dr. Kays tried a second attempt of trial off ECMO. That's when they fix the machine so they can see how Ian would do without it. Again, Ian's blood gases were too poor and he had to put him back on. Eventually, on day 16, it was time for another circuit change, but Dr. Kays had been preparing the machine, turning the flow down for a few days, hoping that this time Ian was going to do it. He made it off and the next time I went in, the machine was gone. The next nine days, Ian was slowly weaned off the vent. When he was 22 days old, I walked into NICU and Sandy, Ian's nurse, had him dressed in a little shirt and had washed his hair for the first time. She and Michele, the nurse practitioner, asked if I wanted to hold him. I had never asked any of the nurses when I would be able to hold him because I was afraid I would not like the answer, but mainly because I knew I wouldn't be able to ask the question without breaking down and crying. I would cry when I would see the other parents in NICU get to hold their babies because I so much needed to hold him.
They put an oxy-hood on him at first, then switched him to a nasal cannula. This is the first time I saw my baby's beautiful mouth. His cry was raspy and weak, but it was music to my ears. At this point, he started making progress in leaps and bounds. It was a continual positive progression from here. They did an upper GI to see how bad his reflux was going to be. The test showed minimal reflux. We started slowly introducing feeds by mouth. I had been pumping breast milk and when they first placed the NG tube, that was the first real food (not IV) he received.
Increasing the feeds by mouth was a painstaking process. Eventually I was able to breastfeed. Since breastfeeding is not an exact science, every day I anticipated when he would be weighed hoping for a nice gain. At the same time the nurses were teaching me how to give Ian his meds by mouth since I would be doing that once I took him home. After Dr Kays was satisfied with Ian's weight gain and progress, after 50 days in NICU, we were able to take Ian home.
He came home on portable oxygen by nasal cannula. I had a huge tank set up in his room and he had a 20 foot tube so I could walk around the house a little with him. He was also on a heart monitor constantly for the first few months and then just at night. He had to take many meds by mouth every day. Nifedipine he took initially because he had pulmonary hypertension, which he was off in a couple of months. He also took Cisapride, Pepcid, which helped with reflux, and Lasix. He remained on oxygen until his first birthday. In his first year and a half he was hospitalized three times for respiratory infections, none of which were RSV. As he gets older, he seems to get sick less often, and tolerates the viruses better.
Today, he is two years old, is saying six word sentences, runs and plays with his older sister, and is in the 50% for height and weight of normal children his age. Nobody can believe he was as sick as he was. He looks so healthy and is extremely active like any two year old.
Ian would not be here if it weren't for his surgeon, Dr. David Kays, who is a pioneer in changing the way babies with Congenital Diaphragmatic Hernia are treated. He has the best published diaphragmatic hernia data with a survival rate of 92% of babies that are born at Shands. He and the wonderful nurses and therapists provided Ian's little body with everything that it needed to grow and work and heal. We are so lucky we found our way to Shands.
We are so lucky in many ways, and knowing how different it could have been, makes us count our blessings every single day for our miracle baby.
Sincerely,
Ian's mom, Judy Bunch (Florida)
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