Kaden's Brain Embolization
Kaden's Brain Embolization
Kaden's Brain Embolization
Kaden's Brain Embolization
Kaden's Brain Embolization
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Kaden's Brain Embolization
Our son, Kaden, was diagnosed with a rare brain disorder known as Vein of Galen Malformation (VOGM). VOGM is very rare and there approximately only 200 new diagnoses in the world per year. It is essentially a brain aneurysm and usually affects your heart (with most babies presenting with heart failure at birth or even in utero) and/or hydrocephalus (water on the brain). It is a very serious diagnosis due to its complexity, rarity, and mortality rate. The following story is our journey so far.
Kaden was measuring large for 36 weeks so an ultrasound was ordered to do routine measurements, never did we think we would receive the news we did that day in July 2015.
During the sonogram, the sonographer took a lot of pictures of Kaden's brain, which struck my husband and I as odd but we did not think twice about it. It was only a few minutes later, after my husband left the sonogram that my doctor told me while I was alone that Kaden's diagnosis was not great. She spoke to me about another mother whose child had a recent VOGM diagnosis in their practice and the baby did not make it (the first case they have ever had). This was obviously extremely upsetting and from there everything was fast and slightly blurry. We were sent to a nearby hospital that same night to confirm our son’s diagnosis. We had hoped the sonographer was wrong but, unfortunately, this was not the case. We were told that some babies survive and some do not. The next few days, I did all of the research that I could and we met with local neurosurgeons who felt confident they could complete the surgery for our son. They explained that I would give birth and he would immediately be transported via ambulance to a local vascular center. After researching this more--and looking at the local surgeons research--it became quite apparent they were not equipped to handle and perform a surgery on a small child, especially a newborn. This was out of the question for my husband and I.
We looked into other hospitals in NYC and Boston Children's hospital. In the meantime we went for a fetal MRI locally in Buffalo, NY. They also confirmed Kaden's diagnosis. After speaking with both facilities, we felt in our hearts we would be giving our child his BEST chance if we went to Boston for his care. So, at 37 weeks and 6 days pregnant, my mother and I made the drive to Boston, MA. It was a long 8 hours drive and even longer day following that was filled with non-stop testing. I had an MRI, two ultrasounds, a heart appointment, etc.) It was determined that due to having pre-eclampsia that I would need to be induced that night. It was stressful knowing that once our son came into the world, we would know his fate. It was also hard because my husband had just started a new job and my mother and I had originally planned on being in boston for a least 1.5 weeks before my husband would arrive. He made the long drive overnight to Boston.
A couple days later, we met Kaden on August 21, 2015. He was beautiful and appeared like a healthy newborn baby. He was monitored in the ICU at Brigham and Women's hospital, which connects to Boston Children's. It was hard having him on a separate floor from my husband and I. That, coupled with the fact that due to a long labored delivery I had strained my legs so much that I had lost feeling in my right leg. This prevented me from being able to walk. We were able to leave a few days later and made the ride back home to Buffalo.
From there, my husband and I decided it would be best for me to stay home so I could care for Kaden, and with all of his appointments that he had it seemed impossible to balance everything. We had regular head sonograms, MRIs, cardiologist, and neurologist appointments. In November, 2015, we found out that his VOGM had decreased in size which was the first time our son's Neurointerventionalist had seen this in his career. We were over the moon and were extremely relieved. We traveled back to Boston in January to have an angiogram, with the possibility of his first embolization. The angiogram showed that it had decreased by itself and we could hold off his embolization longer.
That is where we are now - we have been so lucky to wait to have his first embolization until the end of this month (June 2016). We will be traveling back to Boston, and staying there for 10 days while he has his embolization. Our doctor recommends that after he is released from the hospital a few days after, that we stay locally in the area to avoid any complications. We were told when he was born he would need at least 2 procedures. He will continue to see quite a few specialists and will require ongoing care. Between the lodging and travel expenses, along with the ongoing medical bills (our insurance considers his condition under the catastrophic category so even when we meet our "cap" for the year, we are still paying thousands of dollars for medical bills) we have decided to reach out and make this page.
We appreciate any contribution that you can make..and no contribution is too small. We thank you all so much for reading Kaden's story, keeping him in your thoughts and prayers, and for helping our family give our son his best chance. <3