Luke in 2004

"Let’s get you cleaned up…and then we need to talk." As our obstetrician helped me wipe the gel off my belly from our routine 18-week ultrasound, I knew something was very wrong. He explained that he thought our baby had a diaphragmatic hernia and that it’s stomach was entirely in its chest cavity. He also explained why this was so serious and told us our baby had a 50/50 chance of surviving. My husband, Carl, and I were devastated. After just over 3 years of marriage we decided we wanted to start our family. It took us only 3 months to get pregnant; we were thrilled! My pregnancy had been "textbook" up to this point…how could something be wrong? We were both young, healthy people who had planned so carefully for this child. Our doctor wanted us to come back in two days for another ultrasound. The baby had been very active during this one and he wanted to be sure of what he thought he saw. For the next 48 hours we prayed he was wrong…he wasn’t. Our doctor recommended we have an amnio done to check for other problems. After much thought and prayer we decided not to have this procedure. I was going to carry this baby for as long as God wanted me to, regardless of what the outcome of this test might have been. Our doctor was very supportive of this decision and suggested we talk with a neonatologist in Cleveland (did I mention we live just west of Cleveland, Ohio?) and hugged us both. We left his office stunned, angry and incredibly sad.

We immediately told everyone we could about our baby’s condition so that people could begin to pray. Carl and I knew we had a decision to make. We could trust our Lord to bring all three of us through this incredible situation or we could spend the next 5 months gripped in worry, anxiety and fear. We chose to trust God. Trusting God with our most precious gift was not easy. I remember waking up many mornings with an overwhelming feeling of sadness. On these days Carl and I would find scripture to memorize and remind us of Who was in control. Isaiah 41:10 became especially close to our hearts. "Do not fear for I am with you. Do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand." Our Lord was faithful…working miracle after miracle and answering prayer after desperate prayer.

We met with specialists in Cleveland who said they were doing a little better than 50/50 but we were not convinced they were the right people to care for our child. After each meeting Carl and I were uneasy. There had to be someone out there doing better than anyone else with these babies…and one afternoon while on the Internet I found him! I came across Dr. David Kays’ 92% CDH survival rate and couldn’t believe what I was reading! I printed the info and ran to find my husband… and then we discovered Dr. Kays was at the University of Florida…a bit of a drive from Cleveland, OH! Thank God that this didn’t phase my husband! Carl called information and tracked down the number to his office. Dr. Kays called us back within the hour! He spent over an hour on the phone with us that evening. We learned more from him in that hour than from all of our other meetings with specialists combined! His treatment philosophies and methods were different and his results were amazing. We began to pray…would it be possible to deliver this baby in Gainesville, FL and have Dr. Kays care for it? We soon learned that just as we are promised, with God, anything is possible!

We flew to FL when I was 26 weeks pregnant to meet Dr. Kays. The walls of his office were covered with pictures of babies he had cared for and he could tell us each child’s story. We had another ultrasound while there and learned that part of our baby’s liver was up in it’s chest. Before this ultrasound we knew it’s stomach, intestines and spleen were "up." We were devastated, as we had prayed specifically that this would not happen. Because the liver is so dense, it hampers lung development more than any other organ. When we met with Dr. Kays again after the ultrasound he had tears in his eyes and told us this made our baby’s case very severe. It was so clear to us that his heart and soul were with these babies. We knew we wanted him to care for our child. Amazingly, God worked out detail after detail. We were blessed with the financial security to spend as much time as needed in FL. Carl’s business associates were willing to do the traveling he normally does for as long as we needed. We even learned that Dr. Kays and Shands Hospital were covered by our medical insurance…that truly was a miracle! Our parents were able to come down and stay with us in shifts. We prepared to fly to FL at 36 weeks.

At 34 weeks I went into pre-term labor and was admitted to a local hospital. My contractions were 2 minutes apart and it seemed that Florida was not what God had planned. Still, we prayed the contractions would stop and God again answered. I spent the next 2 weeks on bed-rest and medication to control the contractions. On October 6th, Carl and I flew to FL. Needless to say, I cannot describe the relief we felt when that plane landed! We spent the next 2 weeks waiting…seeing movies and local sights…anything to pass the time. Dr. Richards picked up my pre-natal care (including more ultrasounds and non-stress tests) and we prepared for induction on October 23rd. I decided I wanted to try a vaginal birth as long as the baby was tolerating it well. The induction was a success and after about 12 hours of hard labor (and an epidural that wore off…but that is another story entirely!) and 2 hours of pushing, our son was born. I couldn’t even count how many people were in the delivery room…Dr. Kays had a staff all his own for the baby plus the OB and nurses attending to me. I remember yelling "give him to Dr. Kays" over and over as the OB was suctioning him. Luke was blue and listless…but his eyes were wide open and he was trying so hard to breathe and do what he was supposed to do. He didn’t make a sound. His Apgar score at birth was a "1." After Dr. Kays placed the breathing tube and "bagged" him, he brought him to me for a quick kiss. Dr. Kays had told us he would do this just in case it was our only opportunity to kiss him while he was alive. I told my son that I loved him and to fight! Dr. Kays took him to the NICU to be placed on a ventilator.

Dr. Kays came to get Carl and I later that evening and took us to see our son. We had toured the NICU while I was pregnant, both at home and at Shands, but nothing prepares you for seeing your own baby in that environment. Dr. Kays and Luke’s nurse explained each line attached to him. He was stable…we were thrilled and scared. We held his hand and told him we loved him. We prayed he wouldn’t need ECMO. The next morning Dr. Kays came into my hospital room and told us he wanted to do Luke’s repair sooner rather than later. He was stable and he didn’t want to wait any longer. Dr. Kays did his repair when he was 16 hours old. After the surgery Dr. Kays came into my room again and told us he had both good and bad news. The good news was that Luke had made it through the surgery and was stable. The bad news was his was the worst hernia Dr. Kays had ever seen in a baby that survived. Luke’s hernia was on his left side and his stomach, intestines, spleen and 25% of his liver were in his chest. His spleen had actually herniated through an opening between his aorta and esophagus and was pushed into his right chest, affecting his right lung as well. His heart was pushed completely over to his right chest wall. Dr. Kays was confident that Luke would need ECMO within the next 24 hours…he was right. Eight hours after his repair surgery, Luke began to crash. Nitric oxide bought a few hours but his condition continued to worsen. Dr. Kays called my room and told us to come to the NICU to see Luke before he put him on ECMO. We kissed his head, placed our hands on his body and prayed. Dr. Kays had him on V-A ECMO in a matter of minutes and he was stable once again. Dr. Kays told us he was so glad we were there…that Luke would have died had he been put on ECMO before he was repaired. I know he was right. During our meetings with specialists at home we were told that surgeons there (in Cleveland) didn’t really care if the repair was done on or off ECMO. God had led us to the right person…we were never more sure of that fact than after Luke’s repair surgery!

Luke’s ECMO run was the longest, most difficult 8 days of my life. There was a constant risk that a blood clot from the ECMO circuit could break loose and lodge in Luke’s heart or brain. As hard as it was though, my son would not be alive today without ECMO. We were blessed with a relatively uneventful ECMO run…Luke’s oxygen saturations remained great and his blood gasses good. Dr. Kays kept saying that Luke didn’t know he was sick! During this time Dr. Kays also put a chest tube in to drain fluid accumulating in Luke’s left chest. This fluid build-up was not allowing Luke’s heart to move over to it’s normal position. He even put Luke on his left side to hopefully use gravity to help move his heart. His chest x-rays showed a left lung about 10% the size of a normal newborn’s lung and a right lung about 60-70%. Once the fluid began to drain his heart began to move and his lung’s began to expand at an unbelievable rate! The daily x-rays were testimony to what God was doing through Dr. Kays and the rest of the staff. Luke was extubated when he was 18 days old…a relatively short stay on a ventilator given how sick he was at birth! He was put on oxygen through a tiny nasal canula and even sucked on a pacifier that day! We were thrilled as many of these babies have oral aversions from being on the vent for so long and won’t tolerate anything in their mouths. We got to hold him for the first time on that day…words cannot describe how that felt! They began to give him drops of my breastmilk (which I pumped every 3 hours) through a tube running from his nose to his stomach. It looked as though he was through the worst!

The day after Luke was extubated he was transferred to the step-down NICU. It was time to see how he would eat and how bad his reflux was. We were in for a whole new challenge! The nurses began to give him just 5 ccs of breastmilk at a time to see how he would tolerate it. He did well initially and the amount was gradually increased to 20-25 ccs at a time. At this point Luke began to reflux and had difficulty keeping anything down. Dr. Kays had told us to expect this after he did his repair and saw the position of his stomach and other abdominal organs. Dr. Kays put an NJ tube in that ran from his nose to his intestine so that he could get the nutrients he needed. He told us that Luke would most likely need another surgery to correct the reflux. At just 5 weeks old, Dr. Kays took Luke back to surgery to wrap the top part of his stomach around his esophagus (called a nissen). This would prevent him from being able to reflux. Luke was the youngest baby he had ever done this procedure on but he was strong and stable and Dr. Kays thought he was ready. Dr. Kays also put in a feeding button during the procedure so we could feed him through a tube in his stomach if necessary and burp him. Luke sailed through this surgery and bounced back after only a few days. Dr. Kays had decided to keep the NJ tube in place during the nissen procedure so that Luke could be fed quicker post-op and hopefully make a quicker recovery. He began to eat better and was breathing easier now that he didn’t have to deal with the reflux…another hurdle! A few days later it was time to remove the NJ tube so Luke could eat everything by mouth. When the nurse went to remove it though it wouldn’t budge! Dr. Kays tried too but it was stuck. Unfortunately, when Dr. Kays did the nissen he accidentally put a stitch through the NJ tube…he would have to take Luke back to surgery to remove the tube. Dr. Kays felt awful but Luke was alive and doing so well because of Dr. Kays and the gift God had given him. We were not angry with him…we knew this was yet another step in trusting God. God had brought this little one so far…we knew he would be fine! He again sailed through the surgery and it only set him back two days…a huge relief! He continued to progress!

The next step was to have a head CT done to see what Luke’s brain looked like. Since he had such an uneventful ECMO run we were confident his scan would be normal. The day after the scan Dr. Kays came to his bedside and asked where Carl was. I knew instantly something was wrong and asked him to tell me then…I couldn’t wait. He said Luke’s head CT showed that his brain was smaller than normal. He could not tell us what this meant or what the effects might be. He was confident, however, that with good parenting Luke would be just fine. Once more the Lord was asking us to trust him…once more we trusted.

Luke was discharged just 7 and 1/2 weeks after his birth…nothing short of miraculous. He had endured the hernia repair, being placed on and taken off ECMO, the nissen and the NJ tube removal. He was eating everything by mouth and was on a low flow of oxygen. We left FL for the long drive back to Ohio…Luke did great! Over the next few months we had physical and occupational therapists in weekly. Slowly but surely Luke reached each milestone! We did have to tube feed him in addition to his bottles for about 6 months because he wasn’t taking enough on his own. He was weaned off the oxygen completely at 6 months and off the feeding tube at 7 and 1/2 months. As I write this Luke is 10 months old and is doing everything normal 10-month-olds do…crawling, pulling himself up on furniture and giving hugs and kisses. He loves food and eats really well! Through everything Dr. Kays has been only a phone call or an e-mail away. He has remained involved in Luke’s care and has rejoiced with us over the incredible accomplishments Luke has made. We don’t even think about his abnormal head CT…no one has ever recommended it be repeated because Luke has shown no signs of brain dysfunction or damage. He is a happy, healthy little boy who loves to "read" books and play outside. He is our miracle baby and we will be forever grateful to God and to Dr. Kays for saving our son!

Never give up hope…no mater how grim the circumstance may seem. God works miracles every single day. It is such a privilege to be Luke’s Mommy and I have been blessed to be a witness to what God can do.

Update - June 2004
Luke is 3 and 1⁄2 years old and a VERY BUSY little boy! He loves to play outside on his swing set and ride his tricycle. He has been amazingly healthy and will attend preschool this fall. We saw Dr. Kays in January for a check-up and he was thrilled with Luke's progress. He has developed a small hiatal hernia which Dr. Kays will repair in January 2005. Luke continues to have an expressive speech delay and is receiving speech therapy weekly. He is making progress though and we are confident that the Lord will give him lots of words soon! Each morning when Luke wakes us up we thank God all over again for the miracle that he is and for the blessing of being his parents!

Cathie Firestone

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.