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

Caleb Toney (Elizabeth & Darin Toney):

Sometimes God uses medical intervention for healing. Sometimes He heals without any medical explanation at all. Sometimes He does both. This is a miracle story in which God used both medical intervention and supernatural power to bring about a healing in my son, Caleb Michael Toney. After battling with infertility for more than six years, we learned that all the tests, procedures and surgeries had paid off. God had allowed us to be pregnant with not only one baby, but two babies. Every doctor’s visit showed two healthy appearing babies on ultrasound. I started having signs of preterm labor at 29 weeks. As a result of the preterm labor, I was put on bed rest to keep the babies inutero as long as possible.

At 30 weeks gestation, I was at a routine doctor visit when my doctor thought he saw something out of place on ultrasound. After a lot of silence, he explained that he thought he saw Baby B’s stomach near his heart. He mentioned the term diaphragmatic hernia, and gave a quick explanation and sketch on the examination table paper. He did not cause me to panic, but told me that he wanted another ultrasound performed at Shands. My first clue that this was a very serious condition was the fact that my obstetrician’s nurse made the appointment for the next working day.

At our appointment at Shands, the doctor was even more quiet than my doctor had been during the ultrasound. After my examination he took us in a room and drew a sketch saying, “This is what a normal baby has in its chest and this is what your son has in his chest.” Our baby boy was diagnosed with a diaphragmatic hernia. An opening in his diaphragm had caused his intestines, stomach, kidney, and spleen to migrate into his chest cavity. These organs in the wrong place shifted the heart towards the right and hindered the left lung development. The magnitude of the diagnosis began to sink in our minds. As humans do, we immediately asked God why He would allow this to happen especially with our situation. We waited so long to hear the words, “you’re pregnant” and now to hear the words, “your son could die” tore our insides out. We trusted God but fear gripped our spirit and the next eight weeks of the pregnancy was a battle in and of itself.

The rest of my pregnancy seemed like an eternity. We spent it learning what we could about the birth defect and preparing ourselves physically, mentally, and most importantly spiritually. In a short amount of time we learned what we could about the life threatening birth defect. One thing we learned is that just a few years ago this diagnosis would have meant certain death for our baby. We also learned that Pediatric Surgeon Dr.David Kays at Shands Teaching Hospital had the highest survival rate in the country for a diaphragmatic hernia repair. Our first introduction to Dr. Kays was while I was in triage having my contractions monitored. (My contractions had Darin and I making many runs to the hospital on a weekly basis.) Here I was in a house dress and flip flops looking like that typical “barefoot and pregnant” image and Dr. Kays wanted to take us on a NICU tour and teach us all about his therapy for CDH in a conference room with another expectant couple who had flown in from Chicago. After the medication kicked in and my contractions got under control, we made a day of it. There was so much information that my mind could not even begin to comprehend what our precious son would have to go through. I did know this, Dr. Kays’ passion, intelligence, and approach was exactly what our baby would need to have a chance at life. Although I was sad that my obstetrician could not deliver my babies, we felt extremely blessed to live near the best hospital for our baby. Many parents with a diaphragmatic hernia baby come from all over the country for treatment at Shands. The Lord already had that part worked out for us.

Besides learning about our situation, we immediately began praying and asked everyone we knew to pray. During the next eight weeks while still on bed rest, we received much encouragement from others who were filled with faith for our son’s healing. A close friend had put the healing verses we were praying on little pray cards so that we could put the scripture all around his bed while in the hospital. When fear would grip my spirit, all I could do was read God’s word. Verses like John 11:4, “This sickness is not unto death, but for the glory of God that the Son of God might be glorified by it.” and Psalm 118:17, “He shall not die, but live to tell of the works of the Lord.” I also made an audio tape of me singing encouraging songs and of Darin and I reading the healing verses so that Caleb could hear our voices while recovering. We thought we were ready. We believed Caleb would be healed, but had no idea how far our faith would be tested.

On October 18, 2000 the time finally came to deliver the twins. Fourteen hours after I was admitted, with more than 20 medical professionals present, Cara Marie was born at 4:40 AM. She was a beautiful, healthy baby girl. It was such a relief to hold her in our arms. We had such mixed emotions. I was overjoyed and terrified at the same time. How was I going to go through another birth? My body had to prepare itself all over again for the birth of Baby B. I thought twins were supposed to pop out one right after the other. I learned that that did not always happen. I feared that I would need a c-section with Caleb and then have to recover both ways. As they wheeled me back to my room to wait for the next birth, I heard someone say that Dr. Kays had found a chair to sleep in while he and his team waited for Caleb’s birth. The labor was a totally different experience now and the epidural was not working like it had with the previous labor. Five long hours later, Caleb Michael was born. With barely a glance at him, the doctors and nurses took him away to be ventilated and assessed. His faint, weak cry as he came into this world still lingers in my mind. After Dr. Kays had intubated Caleb, he brought him over for us to see him. He looked so good on the outside it was hard to believe he was so sick on the inside. Darin and I just held hands and wept. We knew it would be the hardest experience of our life.

Caleb did well initially, but started to have problems within the first 24 hours. It was chilling to get a phone call or visit by the doctor in the early hours of the morning. He explained that Caleb had crashed and needed to be put on nitric oxide to buy a little time before the operation. Dr. Kays had to do the repair surgery the very next day. Something Dr. Kays had said on many occasions prior to Caleb’s surgery was that ultrasound gives some indication how severe the hernia is, but no one really knows the extent of the hernia until the surgery is actually performed. In Caleb’s case, he was much sicker than anyone had anticipated. During surgery the doctor had to put the stomach, intestines, kidney and spleen back in the abdomen and patch the hole in the diaphragm. Hopes were that the left lung would develop now that it had room to grow. Before surgery Caleb was described as a moderate CDH but now he was described as a severe CDH. Caleb required extracorporeal membrane oxygenation (ECMO) to keep oxygen in his blood. His heart and lungs could not do the job. The entire run on ECMO was a struggle. Dr. Kays stayed many a night by Caleb’s side thinking, watching, and adjusting his care accordingly. While on ECMO, Caleb had many near death episodes. For some unknown reason, Caleb had problems with cardiac output and severe pulmonary hypertension. I can remember making my way to the back corner of the NICU, knowing my baby was the sickest baby there. I would stand there and watch this baby that I knew God had given me, but I could not hold him and I did not even know if he would live.

These days were so trying. I was recovering from giving birth to twins and trying to breast feed Cara and pump for Caleb’s future feedings. Three days after the birth, Cara and I were to be discharged later that day when we got an unexpected visit from Dr. Kays. He came to us with more bad news. A bleed in Caleb’s brain was detected through a daily ultrasound that is performed on ECMO babies. We knew this could be a side effect of ECMO but we were praying that it wouldn’t be. He asked us if we wanted to turn off the life support because our baby would have some degree of brain damage. I saw the hopes and dreams Darin had for our son vanish from his face with the heavy words of the doctor. Turning off the machines would have allowed Caleb to pass away. Darin was silent so I jumped in and said, “NO! We will wait and see what tomorrow shows.” When you have a mate that God designed just for you, you see some amazing things when you go through a tragedy. When one of you is too weak to talk or think, the other will be strong. I saw this time and time again with our marriage. It was usually Darin being the strong one, but this time I had to be the one. Dr. Kays was glad that we had not given up because he had not given up yet either. Again the phone lines were busy spreading the word for believers to pray.

We could not bear the thought of going home and we longed to be as close as possible to Caleb. Again God worked it all out. Another couple who had been through the same thing and had lost their baby to this same birth defect, paid for us to stay in Gainesville for seven days. We left the hospital and basically moved in to the Residence Inn. Soon word spread and we had more people praying and donating days for us to stay close. People who we did not even know were giving. All in all we stayed there for a month without paying for one night on our own. Here we were: Darin, Cara and me. Even though our heart would break for Caleb, we were so thankful to have our little girl. I’m not even sure how we took care of her during this time, but God gave us what we needed to do the job. It definitely helped to be able to hold her in our arms. But oh how we longed to hold our son too. Darin was able to stay off work and be by Caleb’s side through it all. He would spend 10-12 hours everyday in the NICU. Cara and I would come and go as much as we could. Darin and I would often read the healing verses out loud to Caleb. The Word brought us hope in the middle of despair.

We finally received the first good news about Caleb. Within three days of the brain bleed, it was no longer detectable. God had to be the reason! As we rejoiced, we got another set back. The doctor wanted to do an exploratory surgery to see why his cardiac output and perfusion were doing so poorly. Our emotions were on a roller coaster. The surgery showed that everything should have been working but since it wasn’t, the ECMO had to be converted to venoarterial. Now the ECMO machine was connected directly to one of Caleb’s carotid arteries.

Caleb finally started to slightly improve on VA ECMO. No matter how slight his progress was, we were thankful and praised God. The entire timewhile on ECMO (21 days) it was a rocky course. Due to the blood thinner reduction after the brain bleed, Caleb had a continuous problem with blood clotting. The ECMO circuit had to be changed out every couple of days. This circuit change would set him back. It seemed like we would take one step forward and two steps backward. His perfusion difficulties caused the circulation in his toes to stop and he would eventually lose portions of every toe. We did not care, we just wanted our son to be well even if he had no toes. Caleb also had to have a right and left chest tube to help drain excess fluid from his chest. He finally was able to come off of ECMO and a week later he came off the ventilator. Caleb was now almost a month old. With the repair surgery, exploratory surgery, ECMO procedures, and chest tubes, Caleb had a total of seven surgical procedures. He was going to make it! We could now hold him for the first time. It felt so wonderful to feel his warm, live little body next to me.

The rest of Caleb’s recovery was remarkably fast. Most of these babies have feeding issues and reflux problems but Caleb had neither. He took his feedings by mouth and to everyone’s amazement breast fed like a pro. Before discharge a CT scan showed a normal looking brain. What a miracle! Besides some liver levels being high, his toes in the process of falling off, and him being on oxygen, we prepared to take our “toeless wonder boy” home. Still anxious about the toes falling off, Dr. Kays shared some words of wisdom. He said, “Don’t worry about them. Just let Caleb put them under his pillow and see if the Toe Fairy will come.” We just had to laugh or we would have been crying. The toe situation was not as bad as it sounds. Amazingly enough, when the toe would auto-amputate, underneath would be a pink, healed little toe nub. On December 6, 2000, we took our son home, fifty days after his birth. We were now a complete family. God did hear and answer our prayers. All in all Caleb is developing great. He and his sister bring such unspeakable joy to our lives. Caleb and Cara are a living testimony of medical and supernatural miracles. God is still providing abundantly. Darin was off of work for two months and the medical bills were many, but God has provided a miracle financially as well. All bills are taken care of and we give God the glory for that as well.

In closing, through Caleb’s diagnosis of a diaphragmatic hernia, delivery, repair surgery, multiple surgical procedures, ECMO for 21 days, ventilation for 28 days, parts of all 10 toes gone, and 5 months of oxygen...God was faithful. Dr. Kays admits in writing, “Physical examination reveals an amazingly well appearing boy... He had a very difficult course and his survival hung in the balance for quite a while...He is developing well, eating well and really is a miracle baby...”

Update on Caleb, June 2004

I am truly amazed every day how healthy and full Caleb's life is. He is now three years, 8 months old. He has been remarkably healthy with only a virus here and there. His visits to Dr. Kays have so far revealed the gortex patch still in place and an awesome looking left and right lung. Besides the many scars, pectus, and his little nubby toes, Caleb shows no signs of ever being sick. His health is outstanding!

Caleb's development never ceases to amaze us as well. Even though we were told some deficit would appear at some point due to the bleed in his brain while on ECMO, we have seen no sign of any delays. He crawled, walked and talked on time and continues to meet age appropriate milestones. He has the most incredible sense of humor of a three year old I've ever seen!

Caleb loves to ride his bike, sing loudly, and play with his Thomas the tank engine trains. He and his twin sister keep us on our toes. This fall they are going to preschool for the first time. They are ready but I'm not sure Mommy is! Thanks to God and Dr. Kays, it is a sweet life and we appreciate every minute.

Elizabeth Toney-May dtoney1140@aol.com

Romans 8:28- “And we know that all things work together for good
to them that love God, to them who are the called according to His
purpose.”

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