Dear Mr. Sparks,
My husband, Brad, and I were married on June 30, 2001. We weren't trying to get pregnant, but at the same time, we weren't preventing it either, so we made the decision that whenever it happens it happens. We found out I was pregnant in August, and we were both very excited along with our family.
I didn't have any morning sickness or normal symptoms. At 19 weeks, I went in for a routine ultrasound and was diagnosed with having a large right ovarian cyst. It was about the size of a cantaloupe that had to be removed right away. The baby survived that surgery and was kicking all over the place with all the room it had now. We went in for another ultrasound at 24 weeks-- we thought everything was normal because the technician can't tell you anything. We had an appointment with the regular Ob/gyn to go over the results, and we were told that there was fluid around the baby's lungs, and he wanted us to be referred to a specialist to have a level 2 ultrasound done to see if everything was OK. Our doctor thought that it would be normal and not to worry.
We went to Arnold Palmer Children's Hospital in Orlando, and we were told that we were having a girl, but that she had a right-sided CDH and that her chances for survival were not good. With the fluid in the chest, the lungs were collapsed and would not be able to expand. He said that the only thing to do is wait, and at the birth, they would put in a chest tube and drain the fluid, then hopefully the lungs would expand. She was given a 30% chance of survival. We saw that doctor on a Monday, January 21, 2002. We called family and friends and asked everyone to pray.
I worked in a daycare with a parent who used to work with my mother-in-law in a pediatrician's office. Dr. Whele was told of the baby's condition, and he knew of a doctor in Tampa that helped CDH babies. He called my mother-in-law and gave her the website; she then contacted Mary Allen by email on a Friday night, and on Sunday she got the email saying I could be a candidate for surgery. Monday morning Dr. Quintero called me at work to tell me about the surgery and our other options. We were given an appointment for an extensive ultrasound to be done the next day. This ultrasound was to see if there was any lung growth to work with.
That night, Brad and I made the decision that if this was the only possible chance for her to survive then we had to do it. The ultrasound lasted four hours, with a different diagnosis. Dr. Quintero said that she didn't have a true CDH but had an eventration, that is a very weak diaphragm without any organs in the chest cavity but with severe pleural effusion. He told us that rather than put in the tracheal ligation, he would put in a shunt into her chest to drain the fluid and allow the lungs to expand. There was a 40% chance of the baby pulling out the shunt that could mean another surgery to replace it. This was the best news we could have hoped for, so we scheduled the surgery for January 30, 2002. The surgery went well, and Friday the 31st, we went down for an ultrasound and saw that instead of little slivers of lungs her chest was filled with lung tissue. Her lungs expanded overnight with very little fluid left in the chest.
Every week we had to go to Tampa for ultrasounds-- each time it kept getting better and better. Three weeks after having the shunt put in, they realized that she pulled it out. Since there wasn't much fluid left, they decided to wait and see if it came back before they decided to do surgery again. We were thankful for that. Luckily, the fluid never came back, and each week she got better, and her chances of survival went up. It was then time to schedule the date of the C-section, and the best time for Dr. Quintero was on April 9, 2002. Her chances of surviving were excellent, and we were told that once she was born, she would be ventilated, and after she was stable, she would have surgery to repair the diaphragm 24-48 hours later, with a possible hospital stay of two weeks. We were prepared and had family and friends waiting for her birth. April 9th came and at 8:02, Faith Marie was born. She started crying right away, which surprised everyone. They tried twice to ventilate her, but she refused, so they decided to give her a chance to breathe on her own. Her Apgar scores were a 7 and an 8. She was taken up to the NICU where she was weighed and measured. She was 6 pounds 7 ounces and 19 ¾ inches long.
After many ultrasounds and a chest X ray, the neonatologist and pediatric surgeon came in the room and told us that she had a small hole in the diaphragm that was allowing the liver and part of the intestines to come thorough. To stop more from coming through, they decided to put her on a vent but still allow her to take her own breathes, but the vent would only allow the air to go into the lungs and no where else. She was stable all through the night, and at 2:30 p.m. April 10th, went into surgery to have the hole repaired. That was a success, and we were told that she would still be on the vent and paralyzed for at least 12 hours.
Once again she refused and started moving around and breathing normally after a few hours. She was taken off then and never had to go back on. April 11th, we finally got to hold her and on the 12th, she started feeding. We were given the best news on Sunday, April 14th, that the next day she would be coming home.
She proved everyone wrong and came home within six days of being born and thriving. She is a little slow at gaining weight but is doing well other than that. Since Dr. Whele found Dr. Quintero for us, we decided to have him be her pediatrician. If not for him, who knows where we would be right now. We love everyone who took care of Faith at St. Joseph's Women's Hospital and Tampa Children's NICU nurses and doctors. They are the best, very caring, and many of the nurses had children in their family who had to be in NICU, so they knew how it felt. Cherubs have also helped as a wonderful support system, and it helped seeing other children who had it and survived.
Sincerely,
Faith's parents, Brad and Amy Atkins (Florida)
My husband, Brad, and I were married on June 30, 2001. We weren't trying to get pregnant, but at the same time, we weren't preventing it either, so we made the decision that whenever it happens it happens. We found out I was pregnant in August, and we were both very excited along with our family.
I didn't have any morning sickness or normal symptoms. At 19 weeks, I went in for a routine ultrasound and was diagnosed with having a large right ovarian cyst. It was about the size of a cantaloupe that had to be removed right away. The baby survived that surgery and was kicking all over the place with all the room it had now. We went in for another ultrasound at 24 weeks-- we thought everything was normal because the technician can't tell you anything. We had an appointment with the regular Ob/gyn to go over the results, and we were told that there was fluid around the baby's lungs, and he wanted us to be referred to a specialist to have a level 2 ultrasound done to see if everything was OK. Our doctor thought that it would be normal and not to worry.
We went to Arnold Palmer Children's Hospital in Orlando, and we were told that we were having a girl, but that she had a right-sided CDH and that her chances for survival were not good. With the fluid in the chest, the lungs were collapsed and would not be able to expand. He said that the only thing to do is wait, and at the birth, they would put in a chest tube and drain the fluid, then hopefully the lungs would expand. She was given a 30% chance of survival. We saw that doctor on a Monday, January 21, 2002. We called family and friends and asked everyone to pray.
I worked in a daycare with a parent who used to work with my mother-in-law in a pediatrician's office. Dr. Whele was told of the baby's condition, and he knew of a doctor in Tampa that helped CDH babies. He called my mother-in-law and gave her the website; she then contacted Mary Allen by email on a Friday night, and on Sunday she got the email saying I could be a candidate for surgery. Monday morning Dr. Quintero called me at work to tell me about the surgery and our other options. We were given an appointment for an extensive ultrasound to be done the next day. This ultrasound was to see if there was any lung growth to work with.
That night, Brad and I made the decision that if this was the only possible chance for her to survive then we had to do it. The ultrasound lasted four hours, with a different diagnosis. Dr. Quintero said that she didn't have a true CDH but had an eventration, that is a very weak diaphragm without any organs in the chest cavity but with severe pleural effusion. He told us that rather than put in the tracheal ligation, he would put in a shunt into her chest to drain the fluid and allow the lungs to expand. There was a 40% chance of the baby pulling out the shunt that could mean another surgery to replace it. This was the best news we could have hoped for, so we scheduled the surgery for January 30, 2002. The surgery went well, and Friday the 31st, we went down for an ultrasound and saw that instead of little slivers of lungs her chest was filled with lung tissue. Her lungs expanded overnight with very little fluid left in the chest.
Every week we had to go to Tampa for ultrasounds-- each time it kept getting better and better. Three weeks after having the shunt put in, they realized that she pulled it out. Since there wasn't much fluid left, they decided to wait and see if it came back before they decided to do surgery again. We were thankful for that. Luckily, the fluid never came back, and each week she got better, and her chances of survival went up. It was then time to schedule the date of the C-section, and the best time for Dr. Quintero was on April 9, 2002. Her chances of surviving were excellent, and we were told that once she was born, she would be ventilated, and after she was stable, she would have surgery to repair the diaphragm 24-48 hours later, with a possible hospital stay of two weeks. We were prepared and had family and friends waiting for her birth. April 9th came and at 8:02, Faith Marie was born. She started crying right away, which surprised everyone. They tried twice to ventilate her, but she refused, so they decided to give her a chance to breathe on her own. Her Apgar scores were a 7 and an 8. She was taken up to the NICU where she was weighed and measured. She was 6 pounds 7 ounces and 19 ¾ inches long.
After many ultrasounds and a chest X ray, the neonatologist and pediatric surgeon came in the room and told us that she had a small hole in the diaphragm that was allowing the liver and part of the intestines to come thorough. To stop more from coming through, they decided to put her on a vent but still allow her to take her own breathes, but the vent would only allow the air to go into the lungs and no where else. She was stable all through the night, and at 2:30 p.m. April 10th, went into surgery to have the hole repaired. That was a success, and we were told that she would still be on the vent and paralyzed for at least 12 hours.
Once again she refused and started moving around and breathing normally after a few hours. She was taken off then and never had to go back on. April 11th, we finally got to hold her and on the 12th, she started feeding. We were given the best news on Sunday, April 14th, that the next day she would be coming home.
She proved everyone wrong and came home within six days of being born and thriving. She is a little slow at gaining weight but is doing well other than that. Since Dr. Whele found Dr. Quintero for us, we decided to have him be her pediatrician. If not for him, who knows where we would be right now. We love everyone who took care of Faith at St. Joseph's Women's Hospital and Tampa Children's NICU nurses and doctors. They are the best, very caring, and many of the nurses had children in their family who had to be in NICU, so they knew how it felt. Cherubs have also helped as a wonderful support system, and it helped seeing other children who had it and survived.
Sincerely,
Faith's parents, Brad and Amy Atkins (Florida)
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