Real Hope for CDH

      Affectionately known as "KAYS' KIDS"

  Learn about a 92% survival rate for CDH babies born here at Shands

  Learn about a 92% survival rate for CDH babies born here at Shands

Dr. Kays' Team Has a 92% Survival Rate for CDH babies born at Shands

CDH baby under the watchful eye of Dr. David Kays

Emma Gallagher :

The story of our little girl starts right after we moved from Minnesota to Arizona, during a hectic time in our lives. We had trouble with our movers, and sat in an empty house for a month, trouble with my job, which I was laid off in April, and between the two we went for what was supposed to be a routine 2nd ultrasound that ended up changing our lives forever.

The idea of being able to have a second ultra-sound excited Anne and I as we really were anxious to know if we were going to have another little boy or a girl. We knew in advance of our son’s birth and really enjoyed preparing for his arrival. During April, Anne was having a lot of morning, noon, and night sickness and really did not feel right, but we were not sure if it was the move, an empty house or the pregnancy. When the day came for the second ultra-sound, we were so excited laughing and joking about possible names for our little blessing. We came up with some names for girls and could not agree on one name for a boy. I remember sitting in that waiting room filled with so much hope and tenderness thinking about the chance to have a second little miracle come into our lives and how truly blessed I felt. When it was our turn for the ultrasound, the technician started out by showing us the head, then arms, then legs and asked us if we wanted to know the sex of the baby. We both looked at each other with huge smiles on our faces and nodded an excited yes! The baby was a girl and we both started to cry tears of joy upon hearing the news. The technician suddenly stopped the ultrasound and indicated that something did not look right but wanted the doctor to take a look. She left the room to get the doctor, leaving us in the room as our minds raced with the fear of the unknown and our tears of joy changing to tears of fright. She came back in and said that we needed to move into another room where we spent the longest ten minutes of our lives waiting. The doctor came in and proceeded to perform a level two ultrasound. He spent a long time looking closely at the baby, especially around the chest area. He then proceeded to tell us, in a very dry and unemotional way, that our little girl had a birth defect called a congenital diaphragmatic hernia and that she would probably die shortly after birth. He quoted us very low survival rates and then added that since her hernia was on the right side, the prognosis was even grimmer. We were heartbroken and very confused about what we were just told and unsure about what the future held.

Trying to make sense out of all were we told we tried the internet. Confused by most of what we were reading and deeply saddened by the rest, we were fortunate to find a paper which led us to who would save our little girl’s life. The paper was written by Dr. David Kays of Shands Hospital at the University of Florida in Gainesville and had one piece of information we did understand; a 92% survival rate. We contacted Dr. Kays’ office and were very fortunate to be put in touch with a wonderful woman named Janice who spent almost an hour with me on the phone explaining Dr.Kays' methods and his results. She also gave us names and phone numbers of three families with happy, healthy babies that Dr.Kays cared for the Firestones, the Toneys and the Bunchs. They were such huge blessings to Anne and I, more than they will ever know. They gave us hope at a time that we had none. They all spoke about their children and what they went through with Dr.Kays and how our baby had an excellent chance for survival under his amazing care. In Phoenix, throughout the entire process we met with many doctors and surgeons to find out all of the information about CDH that we could to help us make the right decision to save our daughter. We were very upset by what we were told and how were told, basically giving us no hope of our daughter’s survival if we stayed in Phoenix for her birth.

From April on Anne still did not feel well and was diagnosed with polyhydramnios, which is an excess of amniotic fluid, causing a lot of shortness of breath and discomfort. At the end of April after finally getting our household goods Anne spent an evening in the ER with pre-term labor. After the labor was halted we went the next day for a visit to the doctor and we were told that Anne’s fluid level was very high and the suggestion was to drain some of the fluid. As with everything in this pregnancy, drainage had miscarriage risks. We decided to wait and fly to Florida and meet with Dr.Richards and Dr.Kays to get more answers and get a better understanding of what we should do. The Toney family was so gracious and invited us to stay with them and since their son, Caleb, had an appointment the same day with Dr.Kays, we were able to follow them right to Shands. Dr.Richards performed a level two ultrasound and then took us to his office and explained Emma's right sided diaphragmatic hernia in great detail, even drawing pictures of a "normal" baby's chest and abdomen and then drawing pictures of Emma's, so we could better understand. We then went on to meet with Dr.Kays, but somehow our scheduled appointment was not in the computer. We were told that Dr. Kays would still see us after he saw all of his scheduled appointments. Now usually I am extremely impatient while waiting, but this time it was different. We met some other families with CDH children who where there for follow-up appointments with Dr. Kays. What an amazing feeling to see these children running around and laughing. Dr.Kays also introduced us to Heidi and Dave Gardner and their son Sammy. The Gardner’s had their son, Sammy, in January at Shands and it was now such a beautiful sight to see him sleeping very contently in his Daddy's arms. Finally, after Dr.Kays had already put in a very long day, he was ready for us. We thought that we had flown all the way from Arizona to Florida, and waited all this time and would probably get only a few minutes of his time. Boy, were we WRONG! Dr.Kays spent the next 2 1/2 hours going over every term, procedure and process involved in treating a CDH baby. Dr.Kays even brought us into his office where he had a huge bulletin board filled with pictures of children born under his care with diaphragmatic hernias. From those pictures, he proceeded to tell us each of their names, what they went through and how they were progressing. You could tell by the smile on his face that he has such a special place in his heart for all of these children. He then gave us a tour of the NICU showing us a couple of babies, explaining the machines that they were attached to and what they were doing for the baby. We said goodbye to Dr.Kays that afternoon feeling for the first time that we understood what we were facing and what we needed to do. On the plane ride home we started making arrangements for Emma to be born in Florida at Shands so Dr.Kays could care for our daughter.

After flying home, Anne's fluid level continued to rise and so did the occurrences of pre-term labor. Due to Anne’s increasing difficultly breathing and the ongoing contractions, we decided that we couldn't put off having fluid drained any longer. Anne was scared but knew it had to be done. After the procedure, Anne started contracting again which forced her to stay in the hospital overnight. Unfortunately, the amount of fluid that was drained had returned by the end of the week. In July, Anne's fluid level had risen to its' highest level and another amnio drainage was done. This time 3 1/2 liters of fluid were removed, and again contractions steadily progressed, and she stayed overnight in the hospital again. Anne had some relief after this drainage but it was short lived, and on the next ultrasound the technician noticed membranes floating around. At this time we decided to put Anne on a plane and get her to Florida and into the care of Dr. Richards and Dr.Kays.

So the next morning Anne was on a plane to Florida with an appointment to see Dr.Richards in two days. Heidi and Dave Gardner, the couple we met back in May at Dr. Kays' office, invited Anne to stay with them until I could arrive in a week and a half. On Friday, Heidi took Anne to Gainesville for her appointment with Dr. Richards. Dr. Richards was extremely concerned when he noticed the membranes floating near the umbilical cord indicating it was very dangerous and in two instances he has known of have resulted in the death of the baby. Anne went right from Dr.Richards' office to be admitted to labor and delivery in the hospital where she would stay until Emma was born. I flew down to Florida with our son, Jack, the very next day and Anne's mom flew in Sunday afternoon from Minnesota. On Monday, it was decided that a C-section would be done on Tuesday two weeks earlier than planned. Although the baby was only 36 weeks, she was already over 7 pounds.

On Tuesday morning, the doctors came in and talked about what would happen during the c-section and what teams would be present. Anne was prepped and wheeled out the door to the operating room. I sat alone in the room and cried, scared for my wife and our little girl. A long fifteen minutes later, I was given scrubs and put in a room where I waited another long 10 minutes, my mind racing. I must have looked a bit flushed like I was going to faint because many people who passed by stopped to ask if I was alright. Finally, I was brought into the room with Anne and the c-section started. There were about twenty people in the room ready to take care of Emma . Within minutes, the baby was born and we were lucky enough to hear three muffled cries, and then she was gone into a crowd of doctors and nurses waiting to intubate and evaluate her. Dr.Kays then brought our little bundle of joy over for a quick kiss and then she was off to the NICU. We waited several hours in the recovery room to hear any news. Finally, Dr.Kays came in and said that Emma was stable and that the next few days would be critical and would tell us what direction treatment would go. Emma was born at 12:50 p.m. on July 31st, and I was able to go see her around 7:00 that evening. It was heart wrenching to look at her heavily sedated and hooked up to so many machines.

Dr. Kays decided that Saturday, August 4th, was going to be the day for her repair surgery. The surgery lasted about 3 hours and then Dr.Kays came out and said that Emma tolerated the surgery well, having more than 50% of her liver up in her chest along with the small intestine and colon. A large Gortex patch was used to cover over 75-80% of the diaphragmatic surface. Another hurdle passed, and Emma was on the road to recovery. Several weeks after surgery, Emma started some tiny feedings with pumped breast milk. She was able to take up to 20 cc. and then started refluxing terribly. An upper GI was done and confirmed that indeed she did have reflux, which was controlled with medication. This was great news as another surgery was thus avoided. After about 6 weeks Dr.Kays said Emma could go home to Arizona! On September 5th I flew back to Florida, and then the following day, we all boarded a plane and flew home. Emma was on a very low setting of oxygen for about a month all of the time and then on oxygen for another month just during the night while she was sleeping. Emma had gone through a lot but came through it amazingly well.

The winter of 2001/2002 proved to be a rough one for Emma as she got sick and just did not have the physical abilities to fight it off. Emma spent her first Valentines Day, St.Patrick’s Day and Easter in the hospital. There were also several emergency room visits with serious viral infections and respiratory problems. Each of the hospital stays were three to four days and it was so difficult to see Emma suffer as she was so congested and she had to be deep suctioned by sticking a tube down her nose to suck out large amounts of mucus every few hours. It was also very difficult to see Emma suffer as she was more aware what was happening to her since she was older and very alert.

The summer of 2002 proved to be a journey of going from one specialist to another trying to keep up with her care. Emma now has a Doctor for her lungs, her reflux, and heart. Emma was also tested at eight months for her physical development and was found to be behind. It was determined that she was at four months of development. Emma then began physical, occupational, and speech therapy that is today showing great results.

Emma turned one in July and was finally having a healthy run and we brought her back to Florida for a thorough one year exam to make sure everything was developing as it should. The first week of August we flew down to Shands for a day of tests and exams by Dr. Kays and his team. Emma passed all of her tests and Anne and I finally thought the worst was behind us.

Eight days later Emma became very sick and was back in the hospital vomiting green bile. After two days of inconclusive tests the head of pediatric surgery came in and immediately started the process of preparing Emma for emergency surgery. Emma went through her second surgery that lasted about two and a half hours to clear a major blockage in her intestines and her bowel. When the surgeon, Dr. Grisoni came out to say that Emma came through with flying colors, he said that “we caught it at the right time as she was within hours of losing her bowel to the blockage.” Emma spent about ten days in the hospital, very unhappy with everyone in scrubs but recovered very well.

Emma has advanced amazingly well since September and is accomplishing new feats every day, especially as a walking machine. Emma is a very happy and smiley sweet gift from God that we treasure every single day and look happily to her bright future with us. Both Anne and I were amazed at the kindness of strangers, the willingness from so many to help, and especially the many prayers that were said for our family and Emma. We know in our hearts that if it wasn't for Dr.Kays and the amazing doctors and nurses at Shands and Dr. Grisoni and his team at Desert Samaritan in Phoenix along with all of the prayers, love and support from our families and friends that this story may have had quite a different ending. We feel that we are very blessed!!

Mike Gallagher, Emma's Daddy fiji24@cox.net  

Update - June 2004

Emma will be turning 3 years old next month. She is such a happy little girl and always makes people laugh everywhere we go. She continues to see her cardiologist, gastroenterologist, and pulminologist every 6 months for routine check-ups. She is on a high calorie diet to help her gain weight since she is small for her age (23 lbs). Her main health concern is a small leak in her tricuspid and aortic valve of her heart, which may never even require surgery in the future. She was discharged from occupational and physical therapy in early 2003. She continues to receive speech therapy twice a month at home. Emma enjoys singing, watching Dora the Explorer, playing outside and loves playing with her Leapster. She is a very active child who adores her older brother, Jack. She continues to amaze everyone with her achievements and can always bring a smile to my face. Everyday I thank God for the miracle he has given me. She is such a blessing!

Anne Scherff  anne_scherff@anchorlink.com

Are you a parent carrying a child with CDH? Click here to contact Dr. Kays and his staff