Jonah's Story: After the routine ultrasound at 20 weeks gestation, Bob and Kerrie Van Eck were told that their baby boy had something wrong with his heart. Two and a half weeks later they were told that their baby had a series of congenital heart defects called Hypoplastic Left Heart Syndrome. They were then given three options to consider: To do nothing. Their baby would die, probably within a few days after birth. A heart transplant. A complete reconstruction of the heart, involving 3 open heart surgeries, the first a few days after birth, the second around 6 months, and the third around 18-24 months of age. This was devastating. Bob and Kerrie were expecting a perfect child, and they find out that he was very ill. At first, the heart transplant seemed like a good idea, because it would be a new heart, and only one surgery. But then the risks involved, and the availability of donor hearts quickly made the decision easy. Bob and Kerrie chose the three stage reconstruction. They made plans for the January birth to be in Ann Arbor, Michigan, at the University of Michigan Hospital. This is where Dr. Edward Bove is world renowned for his work with HLHS children. Dr. Bove's statistics were very good. He said that Jonah had about a 75-80% chance of surviving each of the three surgeries. The oldest living child to have had these three surgeries is now 14 years old, and is doing very well. On January 25, 1997, after having labor induced for two days, Jonah Michael Van Eck was born at 12:50 AM. He was 7 lbs. 13 oz., and 22 inches long. His apgar scores were 8 and 8. Jonah was immediately whisked away to the awaiting team of doctors and nurses, including cardiologists, internists, and neonatal specialists. He was then put in the NICU at the Holden Hospital, where he stayed until later that afternoon. He was then transferred to the Mott Children's Hospital, on another floor of the U of M complex. He was not admitted to the PICU (Pediatric Intensive Care Unit), but to the Moderate Care Unit. He was doing very well, and after being given prostaglandin to keep his Patent Ductus Arteriosus (PDA valve) open, he did not even have to be intubated (on a breathing ventilator). He stayed there until his first surgery on January 29. Jonah survived the surgery. He had a few complications with bleeding, but Mom and Dad were able to see him later that afternoon in the PICU, as well as other relatives that had gathered for support. He was extubated (came of the ventilator), but then due to some complications had to be re-intubated for a couple of days. He stayed there for 7 days, and then moved back to the Moderate Care Unit. He was able to come home 10 days after his surgery, on a feeding tube and with several medications. He was 2 weeks old. One and a half weeks later at the pediatric cardiologist followup, he was admitted to Butterworth Hospital in Grand Rapids, for tachycardia (rapid heart rate -210). He was put on another medication, which seemed to keep his heart rate lower. He came home 2 days later. One month later he was admitted again for tachycardia and arrhythmia (irregular heart rate). He was put on yet another medication, stayed for 2 days, and sent to see an electrophysiologist. The new medication seemed to be keeping his heart rate lower and more regular. The Stage 2 surgery (hemi-fontan) was on Wednesday, July 16 1997 in Ann Arbor, Michigan, and went very well. Jonah was home 5 days later! The Stage 3 surgery (Fontan) was on July 7, 1998, and he was home 10 days later, but our local hospital for 5 more days for plueral effusions. In February 1999, Jonah had an experimental device called the ampletzer, implanted into his heart to close a hole, called the fenestration. This seems to be working wonderfully. Jonah will be starting Kindergarten in the fall, and is doing great. He sees the cardiologist only once a year now! The only way anyone can tell he has an abnormal heart is if they see his scar. He talks about it, and will show his friends his "heart scar". This child is amazing, and we still thank God for him every day! A Dedication from Bob and Kerrie We give God all the praise and glory for Jonah's life. We have already witnessed several miracles with his life, and we treasure the time that we have with him each day. We do not know how much longer we will have him, but we are thankful for this time that we are able to get to know him better. He is such a precious gift from God. Jonah has two older brothers, (Noah and Nicholas) and a younger brother (Benjamin) (click here to see their pictures). They love their little buddy very much, and pray for him daily, as we do also. We thank our families for their prayers and support, for taking care of Noah and Nicholas during hospital stays, and for loving Jonah, almost as much as we do. Psalm 71:5,6 For thou art my hope; O Lord God, Thou art my confidence from my youth, By Thee I have been sustained from my birth; Thou art He who took me from my mother's womb; My praise is continually of Thee. What does it mean to be the parent of a child with Hypoplastic Left Heart Syndrome? It means thanking God for another precious day with your child. It means measuring out medication in drops and panicking if he spits some out. It means listening to his heart several times a day. It means putting slippers on him, even in summer because his feet are purple. It means wondering how long he will be with you. It means praying for the will to live, even if he doesn't. It means you are very special to be given this role as parent. It means endless doctors, nurses and hospitals. It means siblings often have to suffer. It means rejoicing in the Lord, even during suffering. It means thanking God for another precious day with your child.

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