This story is about our amazing son Zachary and his fight with Infantile Spasms. This is written for all the inspirational children we have met along our journey, some of whom are now angels in heaven protecting our Zachary.
Zachary was born on April 11, 2000 at 10:32pm. I had a normal uncomplicated labor but had a cesarean due to failure to progress after 18 hours of labor. There was nothing to predict what would happen in the future.
Zach’s first six months were that of a normal happy and healthy baby. Being a NICU nurse myself, I would go to the hospital at night and thank God for my perfect boy. Around six months of age I started noticing some staring spells. I was concerned but pushed it to the back of my mind until November 10, 2000 when my husband Frank asked me what Zach was doing. When I looked over I saw him doing what looked like crunches. They were rhythmic and had about ten in a row. When it was over Zach looked at us as if he were scared. We immediately called the pediatrician and were told not to worry unless it happened again. When it did we were still told not to worry. We made an appointment to see a neurologist because I had a feeling it wasn’t “alright”. The first neurologist basically gave us no cause for worry and said Zach appeared fine. When the episodes continued we brought Zach to the ER. They also sent him home. Finally we had an EEG done after barging into the pediatrician’s office and crying. We had an appointment with another neurologist who read his EEG on Nov. 24th. He diagnosed Zach with Infantile Spasms and gave us the grim statistics. However Zach was caught early and had the best chance if we could not find anything else wrong with him ie; Cryptogenic IS. We were immediately admitted to the hospital.
We spent Thanksgiving weekend in a desperate search for ACTH because we wanted it started as soon as possible. Finally, an employee at Nord had mercy on us and shipped in spite of the holiday. Zach was started on 80units. After one week he was seizure free. In four days the seizures returned, one hour before discharge from the hospital! We were crushed. Next, we increased his dose and went as high as 120units! At this point Zach could not smile and hardly opened his eyes. He seized up to twenty times a day, but now in single crunches. Zach was hospitalized again one week later. We decided to try Ativan, Klonopin and Topomax all with no effect. Zach came home from his second hospitalization one week before Christmas. Zach was beginning to show signs of steroids, especially the puffiness and irritability. We tried to make it a happy holiday but Zach seized all Christmas morning. After New Year once again we were hospital bound. This time we tried Depakote. During this hospitalization Zach began to show signs of a cold , but it didn’t seem terrible and we were discharged in order to seek another opinion in Boston’s Children’s Hospital. We drove eight hours in the Rain, stayed for our appointment and left. Zach was miserable from his cold by now. We bearly had enough time to drop our bags when we brought him back to the hospital. He had an RSV respiratory infection, probably secondary to the steroids. However, an amazing thing happened during this stay, the seizures stopped! The Depakote was working! We went home in time to board a plane to Detroit to visit Dr Chugani. We were disappointed to hear that Zach was not a surgical candidate, however he remained seizure free. We had three great weeks at home with Zach. We began to wean his ACTH. He was smiling bigger than ever and starting to pull to stand. We thought it was all over. The last week in January we noticed Zach gasping for air and spitting up more than usual. One night he woke up blue and choking and we rushed him to the emergency room again. He was admitted. They ruled out seizures and put him on oxygen. No one could figure out what was wrong with Zach. After three long week of not getting any answers and Zachary declining to the point where he could bearly breathe on his own, we insisted on a transfer to Mount Sinai in NYC and changed our pediatrician! He was transferred to the PICU stepdown to have tests run. Soon after the ICU doctors and pulmonologists were telling us Zach needed to be put on a ventilator and we had to send him to surgery for a lung biopsy. My baby was a swollen shell of his previously beautiful self. He had tubes to breathe and eat, monitors, central IV lines and a chest tube. He was taking eleven different medications and still we didn’t know what was wrong. After a terrible night in which Zach almost didn’t make it, a housekeeping staff member asked if she could pray for us. The next morning Zach began to turn the corner and he was taken off the ventilator days after. I couldn’t wait to hold my boy, however when they tried to put Zach in my arms he was moving so fast that I couldn’t hold him. Was this a seizure? After some research we realized Zach was not seizing but had a severe movement disorder from a reaction to all the sedatives he was given while on the ventilator in combination with some withdrawl. He was put on Ativan and Methadone. This took two weeks to pass. He remained in the PICU for several more weeks while we tried to decide on starting steroids again for his lungs. We also saw geneticists and saught yet another opinion from Columbia. Eventually we decided to send Zach to surgery for a Gastrostomy tube and a Nissan (a procedure for GERD), being as Zach wasn’t holding down much of his food. After his surgery we were told that one genetic test run in San Diego, CA. for CDG came back positive. We had our answer, well not quite. One day later, after being probed by residents who wanted to see a rare disorder, we were told the test was wrong! It was rerun several times and was definitely negative! He went home on April 10, 2000. One day before his first birthday! He was smiling and happy although he had a nasal cannula for oxygen and a GT for feeding. We began Physical Therapy right away because Zach couldn’t sit upright without a pillow behind his back. Soon we enrolled him in group PT and OT also. We didn’t know what to expect but we had our boy with us and that was all that mattered!
I’m writing this now six months later. Zachary is eighteen months old. He has been off oxygen and steroids for 5 months and his pulmonologist says it was the virus secondary to the ACTH that caused his illness since he hasn’t relapsed. He will discontinue Zach from his care after the winter flu season as long as all is well. After many opinions we have classified Zach as having Cryptogenic Infantile Spasms. Although this in itself is not genetic, we still struggle with having another child. Zachary has been seizure free since January, 2000. Remarkably he never seized when he was so critically ill! This is a good sign! He remains on Depakote ( his only medication!) with no visable side effects although we have his liver checked often and always hold our breath at result time! He still has a GT although we haven’t used it for months! Zach eats wonderfully and holds it all down! We just need the courage to have the tube pulled! He has learned to walk and says 20-25 words and several phrases! Last week at Gymboree an unknowing teacher told me my son’s language skills were very advanced for his age! I cried in joy! Zach is truly our hero!
Now we try to look forward and only look back to appreciate how far we’ve come. Writing this has been difficult but when we remember how much reading Eddie and Kaitlin’s Stories’ meant to us in the beginning we knew we had to do this. If Zach can bring one family the hope and perseverance they brought us then it’s all well worth it! My best advice is never give up! Seek many opinions and therapies and pray A LOT. MIRACLES happen! Zach is proof!
All our love and gratitude to our friends and family who went through this with us, we love you all dearly! (DH , LS and KLM thanks for the rides!)
Special thanks to the Amazing PICU Staff at Mt Sinai Hospital, and to Dr Ariel Sherbany and Alyssa Rial, PT who were there from the start!
Most of all thanks to all who prayed for us, many of whom we haven’t even met,(the online prayer group, Iris, and so many others!) This is what we believe truly healed Zachary!
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