Cohen's Journey to Duke
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Cohen was born with a lifelong condition called hydrocephalus or "water on the brain." Hydrocephalus occurs when cerebrospinal fluid (CSF) does not properly flow through the brain's ventricles, causing the ventricles to dilate and put severe pressure on the brain. During my 24 week ultrasound they noticed Cohen's ventricles were incredibly enlarged. A typical baby at his gestational age should measure no more than 10mm and his were 25mm. I was referred to a high risk obstetrician, who specialized in maternal-fetal medicine, in order to keep a close eye on his condition. The first appointment with the OB was far from what we ever expected. He told us there was a good chance that Cohen would suffer from severe cognitive disabilities and offered to terminate the pregnancy. Our hearts were broken, but not for a second did we let the prognosis bring us down. After a handful of different genetic and blood tests, we were still left without a cause. Our OB referred us to a neurosurgeon and the planning began. We would deliver early by c-section and a day or two after birth a shunt would be placed. A shunt is a narrow tube that allows excess CSF to drain out into another part of the body, such as the heart or abdomen. The neurosurgeon wanted me to deliver at 32 weeks, but my OB argued we should wait as long as possible. We needed a big strong baby to withstand brain surgery! I was given a set of steroid injections to help mature his lungs and after much debate and scheduling, it was decided Cohen would be arriving on June 2nd, only four weeks early.
At 9:19am we welcomed a beautiful and healthy little boy and he was taken straight to the NICU to be closely monitored. Over the next few days his head circumference was stable (it normally enlarges), so he was taken for an MRI to see how things were looking. Neuro brought us the best news possible, Cohen's condition was better than anyone anticipated, he had aqueductal stenosis which is the most common form of hydrocephalus and we wouldn't have to place a shunt. They decided to a try a relatively newer method called endoscopic third ventriculostomy (ETV), a procedure where they make a small hole inside the brain to re-establish CSF flow. At a week old Cohen underwent his surgery and they also placed a small reservoir in between his skull and skin in order to make it easier to withdrawal fluid if it began to build up again or insert a shunt if the ETV completely failed. After 6 hours of waiting and pacing our neurosurgeon brought us much relief, "the surgery went so well it was boring." A mere 9 days later and we were on our way home! Even the NICU doctors were amazed by his speedy recovery. Our family could not be more grateful to have such an incredible little boy who has already brought so much joy and pride to our hearts.
Though there are several causes to hydrocephalus, we were one of the many cases that went unsolved. One to two out of 1,000 babies are affected by hydrocephalus and it is the most common reason for brain surgery in children. Doctors are sometimes understandably resistant to take on complicated hydrocephalus cases because little is known about the disorder. We don’t always know what causes it and we don’t know how to make people well. Over the last 50 years, there has been no significant improvement in hydrocephalus treatment and no progress toward prevention or cure. Research is essential. At the very least, we need better treatments, with more positive long-term outcomes, and diagnostic tests that are accurate, cost-effective, and noninvasive.
However, there is some promising research happening using the stem cells from umbilical cord blood to treat pediatric brain damage. Dr. Joanne Kurtzberg is currently conducting trials at Duke University where the stem cells from the cord blood are being infused back into the children's blood stream. It is thought that the stem cells help replace the brain cells damaged from the pressure. The trials were originally intended for children with cerebral palsy, however a family with a hydrocephalus child heard of the research and suggested trying the infusion for their son. This simple procedure has shown incredible outcomes and brought hope to so many families. Thankfully, we learned of these trials prior to Cohen being born and were able to bank his cord blood after birth. We have been in contact with Dr. Kurtzberg's nurse and are planning our first trip east for Cohen's infusion.
The cost for Cohen's care, from the NICU and surgery to his upcoming trip to Duke, has been beyond overwhelming. Insurance does not cover the blood infusions because it is still in the trial stages, so we will be paying solely out of pocket. From the procedure to transportation and accommodations, we cannot afford it all on our own and are asking for your help. Every penny counts and we cannot be more grateful for any aid we receive.
Cohen and our family thanks each and everyone of you who has provided the much needed love, well-wishes and support over the last month. We love you all!
Abby Taylor & Matt Desiderio
For updates on Cohen visit: www.facebook.com/cohensjourney
At 9:19am we welcomed a beautiful and healthy little boy and he was taken straight to the NICU to be closely monitored. Over the next few days his head circumference was stable (it normally enlarges), so he was taken for an MRI to see how things were looking. Neuro brought us the best news possible, Cohen's condition was better than anyone anticipated, he had aqueductal stenosis which is the most common form of hydrocephalus and we wouldn't have to place a shunt. They decided to a try a relatively newer method called endoscopic third ventriculostomy (ETV), a procedure where they make a small hole inside the brain to re-establish CSF flow. At a week old Cohen underwent his surgery and they also placed a small reservoir in between his skull and skin in order to make it easier to withdrawal fluid if it began to build up again or insert a shunt if the ETV completely failed. After 6 hours of waiting and pacing our neurosurgeon brought us much relief, "the surgery went so well it was boring." A mere 9 days later and we were on our way home! Even the NICU doctors were amazed by his speedy recovery. Our family could not be more grateful to have such an incredible little boy who has already brought so much joy and pride to our hearts.
Though there are several causes to hydrocephalus, we were one of the many cases that went unsolved. One to two out of 1,000 babies are affected by hydrocephalus and it is the most common reason for brain surgery in children. Doctors are sometimes understandably resistant to take on complicated hydrocephalus cases because little is known about the disorder. We don’t always know what causes it and we don’t know how to make people well. Over the last 50 years, there has been no significant improvement in hydrocephalus treatment and no progress toward prevention or cure. Research is essential. At the very least, we need better treatments, with more positive long-term outcomes, and diagnostic tests that are accurate, cost-effective, and noninvasive.
However, there is some promising research happening using the stem cells from umbilical cord blood to treat pediatric brain damage. Dr. Joanne Kurtzberg is currently conducting trials at Duke University where the stem cells from the cord blood are being infused back into the children's blood stream. It is thought that the stem cells help replace the brain cells damaged from the pressure. The trials were originally intended for children with cerebral palsy, however a family with a hydrocephalus child heard of the research and suggested trying the infusion for their son. This simple procedure has shown incredible outcomes and brought hope to so many families. Thankfully, we learned of these trials prior to Cohen being born and were able to bank his cord blood after birth. We have been in contact with Dr. Kurtzberg's nurse and are planning our first trip east for Cohen's infusion.
The cost for Cohen's care, from the NICU and surgery to his upcoming trip to Duke, has been beyond overwhelming. Insurance does not cover the blood infusions because it is still in the trial stages, so we will be paying solely out of pocket. From the procedure to transportation and accommodations, we cannot afford it all on our own and are asking for your help. Every penny counts and we cannot be more grateful for any aid we receive.
Cohen and our family thanks each and everyone of you who has provided the much needed love, well-wishes and support over the last month. We love you all!
Abby Taylor & Matt Desiderio
For updates on Cohen visit: www.facebook.com/cohensjourney
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Abby Taylor
Organizer
