Born July 26th, 2004
Matthew was born July 26, 2004. Despite pre-term labor, he was born on his due date. Other than the pre-term labor, my pregnancy had been normal and we had no idea that anything was wrong with our baby. The night of July 25, I felt something wasn’t right, so I called the nurse and eventually my husband drove me to the hospital. The nurses said I wasn’t in labor and wanted to send me back home. Sensing our concern, however, one of the nurses suggested I stay for monitoring for a while. A short time later she said she would call the doctor and recommend that I stay overnight and the next day I would likely be induced since it was my due date. I will always believe that this nurse saved my baby’s life.
As they moved me into a private room and started hooking up the monitors I saw a look of concern on the nurse’s face. We looked at the baby’s heart monitor and I said “That can’t be right”. It was over 200 beats per minute. Only minutes earlier it had been fine. A string of nurses came in to check the monitoring equipment and then they brought in the ultrasound machine. My nurse told me that the baby’s heart rate was too high and I would be delivering by emergency c-section very soon. I asked the ultrasound technician if something was wrong with the baby and she told me I would have to wait to talk to the doctor. At that moment I started crying. Things began happening very quickly. Shortly after 2am Matthew was delivered. When I heard his first cry, a strong, healthy sounding cry, I was so relieved. But my relief was short lived though. I barely got a glimpse of his little face as they rushed him out of the room. By the time I was back in my room, my family was there and they doctors were telling us that Matthew would be transported to Texas Children’s Hospital immediately. I asked if I could see him first and was told that there wasn’t time. The neonatologist mentioned that in addition to the tachycardia Matthew also had a “largish head”, but that it probably didn’t mean anything.
The next few days were a blur. We learned more about SVT (supra-ventricular tachycardia), and my family drove back and forth from my hospital to TCH. I was discharged approximately 36 hours after delivery and insisted, in spite of my husband’s concerns that I be taken to see my baby. He wheeled me into the NICU to see Matthew and I got to hold my little boy for the first time. The SVT was being controlled by medication and we immediately started asking when we could take Matthew home. Four days after birth, they said we might be able to take him home soon, but they wanted to do an ultra sound and then an MRI to make sure the size of his head wasn’t significant. That is the day we learned about the Vein of Galen Malformation. We stood in the NICU looking at our baby. Apart from the wires and machinery around him, you couldn’t tell anything was wrong. He was 8lb 11oz at birth and looked so big and strong compared to all the tiny preemies around him in the NICU. I wondered how my baby, who looked so perfect, could have these terrible things wrong with him.
We were surrounded by family and friends that cared for us and our little boy. We were told that people all across the US were praying for Matthew. Even now, we occasionally meet someone who is a friend of a friend or knows someone in our family and they tell us they remember hearing about Matthew and praying for him.
Matthew’s first embolization occurred when he was 10 days old. Since he was diagnosed at 4 days they were able to use his umbilical artery for the procedure, which we were told was much safer for a newborn than using the femoral artery. Dr. Michel Mawad performed the procedure. He told us he was able to block about 75% of the feeders, but that he would need another procedure in 6 months to a year. Matthew recovered well and we took him home from the hospital when he was 18 days old. He would be on heart medications for a while, but otherwise was doing fine. We had a few minor set backs, mostly unrelated to the VOGM. I worried a lot, constantly wondering if anything out of the ordinary might be a symptom. We made a number of trips to the emergency room, some for good reason, some not. At 6 months there was another MRI and at 8 months another embolization, blocking “most” of the rest of the feeders. Matthew continued to develop normally and was eventually taken off all medications.
Currently Matthew has an annual MRI and sees a neurologist about every 6 months. He attends pre-school and his development is age appropriate. He is approaching his 3rd birthday and is now a big brother to Jackson , a healthy 6 month old who loves his brother’s attention. Every year, when Matthew has his MRI, we get a bit nervous. We wonder what it will show and if the doctors will recommend another procedure. We know that another embolization is likely in Matthew’s future, but for now we have a healthy, happy, growing little boy.
**2010 update*** Matthew is now 5 years old and in Kindergarten. He continues to have an annual MRI and sees his neurologist and neuroradiologist once a year. His development remains age appropriate. We have been told that another embolization is still likely in Matthew’s future, but for now the doctors remain pleased that there is no futher change in his condition, and that he continues to grow and develop just like any other healthy 5 year old boy.