Zachery Liam Vandekuyt

Zachery’s Story

Born July 23rd, 2009

After a fairly uneventful pregnancy, the long awaited day had finally come. I was in labour. As I was induced with our firstborn, Ethan, I was excited as the first wave of contractions began naturally on Wednesday evening. Our second child – a boy was born early Thursday morning by caesarean – At 9lbs 5oz, my pelvic structure would not allow vaginal delivery. He let out a small squawk but no loud wail succeeded it. Immediately, the respiratory therapy team was called in. Our son was soon transferred to the Neonatal Intensive Care Unit. We had two names picked out but we both agreed that his name had to be Zachery, which means “God remembers me”. We asked if my husband Rob could go to the NICU, but they advised him to wait until Zachery was stabilized. They assured us that the doctor would come to speak with us as soon as Zachery was okay. Rob and I were brought into the recovery room and waited. I’m not sure how much time passed – it could have only been an hour, but it felt like a lifetime. Finally the neo-natal pediatrician came to speak with us. The fear that had been building since his delivery was now reality. They suspected a congenital heart defect and had called Sick Kids Hospital in Toronto to arrange a transfer.

Six hours after Zachery’s birth, I was finally allowed out of bed and wheeled into the NICU to meet my son. Nothing could have prepared me for the pain and joy that enveloped me those first few moments. I was so happy to see and touch Zachery, overwhelmed by wondrous love that rushes in when one first lays eyes on their child. But at the same time, I was not prepared that the heart-wrenching pain one experiences when seeing their precious child hooked up to so many tubes and wires. Zachery was sedated – they explained to me that he was such a feisty boy that they needed to keep him in this state or he would pull all his tubes out. I didn’t know whether I should laugh or cry, so I did both. We chose “Liam” as Zachery’s middle name because it means “Strong Willed Fighter” and “Helmet of Protection”. We felt completely helpless so giving him a strong name seemed like the only thing we could do.

There were so many questions that we wouldn’t have answers to until Zachery was at Sick Kids Hospital. Not having answers was difficult, but God gave us the patience and knowledge that Zachery was getting the best care. A transfer team with their “portable hospital” soon arrived. They ran several tests, trying to determine whether or not his heart was the source of the problem or a symptom of a different problem. Further tests identified pulmonary hypotension as another symptom or problem. Zachery was transferred that evening by ambulance and he remained stable throughout the night. By Friday morning, they identified that Zachery suffered from Vein of Galen Malformation. He underwent extensive tests – echo cardiograms, head ultrasounds and MRIs to determine the extent of his condition. The physicians at Sick Kids explained that they hoped to keep Zachery stable so that they could better assess his condition and that surgery could be delayed.

On Saturday, Zachery’s sedation was reduced – we had a great afternoon with him. He squeezed our fingers. He opened his eyes and looked at us, following our voices with his eyes. He responded to our voices and singing. For the first time since his birth, I felt a little less helpless: His mother was right there to hold his hand, stroke his face and soothe him with lullabies. That night, he took a turn for the worse. His condition was deteriorating rapidly and emergency surgery was the only option to stabilize him. On Sunday afternoon, he underwent a procedure using interventional radiology (embolization) in attempts to eliminate the arteriovenous shunting of blood. During the procedure, one part of the shunt was eliminated successfully, but another part of the vessel burst creating a massive bleed into the brain. The extent of damage in Zachery’s brain was too great and there was nothing that they could do to save him.

We were brought to Zachery’s bedside and the tubes and machines that had separated us those past few days were taken away. I was able to change his diaper and we both held our son for the first and last times. He died very peacefully in my arms two hours after surgery while we were singing the song “Jesus Loves Me”.

We are so thankful for those at Toronto Sick Kids and Toronto Western Hospitals who were a part of Zachery’s short life. They were attentive, accommodating, empathetic, and passionate about providing the best care possible for Zachery and for us. They showed us with their own tears that although they are very professional, they are not hardened by their daily exposure to very sick children and to the heartbreak of losing a baby.

Three months have passed since the birth and death of our dear son Zachery Liam. We have learned through his autopsy that even if the shunting could have been eliminated, Zachery would have had little to no quality of life. We are thankful that God chose to take Zachery home with him rather than let him suffer with no connection to this earth and those who love him. Coming to terms with the fragility of life, accepting our loss, and mending our broken hearts are processes we know will take time. Although we don’t feel the same happiness and zeal for life right now, we hold tight to the promise and hope that our grief will turn to joy and the promise that one day we will all be together again in Heaven.

UPDATE 22-07-2012
It’s been three years since Zachery’s birth and death. We miss him dearly, not a day goes by that I don’t think about him. Still, I can accept that God chose what was best for him. It was a hard and difficult journey to that acceptance, but I can truly say I feel joy and happiness again. One year ago, we were blessed with a beautiful little girl, Eliya Noelle. The pregnancy was a very emotional and fearful one. We were reassured by the prenatal diagnosis clinic that it was extremely unlikely that we would have another child with VOGM, but they monitored us closely with ultrasounds. Each scan was very positive, showing great brain and organ development. At 34 weeks, they out-ruled Vein of Galen Malformation. Still, it was hard to shake the fear inside of me. Eliya was born 5 weeks early by emergency c-section (due to placenta previa) with respiratory complications. I think Rob and I were paralysed by fear at this point, numb from disbelief that the nightmare could be happening all over again for us. After a few rough days and a head ultrasound to ensure that this wasn’t VOGM, Eliya began to improve, soon breathing on her own. Her issues were diagnosed as all related to prematurity. She came home 12 days later and steadily improved. Eliya is now a happy, energetic one-year old, such a wonderful addition for our family. We are thankful for all the stories here on this Vein of Galen Support group, especially for the knowledge that we are not alone.

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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