Danny Gilbert

Danny’s Story

Born October 8th, 2005

My son Danny was a difficult pregnancy. Everything that could go wrong went wrong. I had gestational diabetes and preeclampsia and was sick all the time. I finally went into labor on October 8, 2005 and when I got to the hospital they had to do an emergency C-section because Danny was transverse (lying sideways) but that evening there he was, 6lbs 4oz and he was perfect.

Doctors checked Danny over and no problems were noted and he went home with me. Everything was fine until his four month check up. His head circumference suddenly measured off the charts. I work as a nurse so I questioned this. The doctors told me it was just normal growth and they would check him again at six months. At six months his head was still not chartable in size but he was normal otherwise. My husband and I started to get concerned even though the doctors assured us he was fine. We started reading about hydrocephalus and noticed Danny had a lot of the symptoms, large head, bulging head veins and a soft spot that wasn’t closing. We took him back to the doctor and asked if this could be his problem. The doctor thought this was a possibility and decided to do a CT scan. We had the scan done and they called us back an hour later saying they found a mass and we needed to bring Danny straight to the hospital. We were at the mall when we got that call and I’ll never forget taking the mall stroller back and walking through the mall in a daze crying and not knowing what to do.

When we got to the hospital we met with a neurosurgeon that showed us the CT. The mass kept getting bigger and bigger and it was right in the middle of his brain. Then we met with an oncologist who told us if Danny had a tumor his prognosis was poor. They scheduled him for an MRI in the morning. I kept praying for a miracle and in a way we got one. After the MRI they told us they had good news and bad news. The good news was Danny didn’t have cancer. The bad news was he had a brain malformation. But there was a treatment; they were sending us to Cleveland Clinic for surgery.

When we got to Cleveland everything happened so fast. There were EKG’s and echocardiograms where they told us Danny was in congestive heart failure. He was put on medications to treat that. Then the angiogram, after which we heard the diagnosis Vein of Galen for the first time. Danny had his first embolization on May 23 2006 preformed by Dr. Henry Wu. He saved our son’s life, there is no doubt. He was scheduled for his second embolization in July of 2006 but developed post-op complications.

Days after surgery Danny couldn’t keep his formula down. We were back in Toledo, Ohio and doctors kept telling us he had a bug. We tried to explain he just had brain surgery but they kept him in the hospital for 8 days for monitoring and did nothing else. Danny continued to vomit and we were sent to Cleveland ’s Rainbow Babies and Children’s Hospital for treatment. Within days he had intravenous feedings and tube feeding. He had developed gastroperesis (delayed stomach emptying) from the shift in pressure in his head. He went home on tube feeding for two months.

After Danny got better there was a conflict on when to do his next embolization. Cleveland Clinic wanted it done right away but Rainbow wanted to wait. He was thriving. So we waited. In October 2007 Danny started having seizures. Our neurologist decided it was time to consider another embolization.

Danny will be going back to Cleveland Clinic on June 26, 2008 for his second embolizaton. Dr. Thomas Mazaryk will be performing the surgery. We pray everything goes well. If it does, there are no further embolizations planned. Dr. Mazaryk will treat with gamma knife for the small feeders after Danny’s brain is more developed. Thank God for this technology.

Every day Danny is a miracle. He is strong and brave and funny. He has known more in his 2 ½ years than I have known my entire life. He brings such joy to his dad and I’s life. He is the reason I do anything I do in my life. There is nothing that can pay him tribute in a proper way. But through this site, which I have visited so many times since his diagnosis, I can tell his story. You can know Danny as I have come to know your children. I pray for all of them every day.

**Update January 2010** Just an update, danny will be starting kindergarten next year. His surgeon was so impressed with his progress and cognitive ability that he put off his next embolization until at least next year.

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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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2 Responses to Danny Gilbert

  1. Elaine Hodnett says:

    I hope Danny is doing well. We also live in Toledo and my granddaughter has this same disease. Alyssa is going to Cleveland Clinic to do a second embolization in 6 weeks. We are worried of course. Alyssa will be 4 years old in August. We were told that Toledo has 2 VOGM patients and no other city in the world has more than one. Please let me know how he is doing. Elaine, Alyssa’s G-mom

  2. I do not know if it’s just me or if everybody else encountering problems with your site. It looks like some of the written text within your posts are running off the screen. Can someone else please provide feedback and let me know if this is happening to them too? This might be a problem with my web browser because I’ve had this happen previously. Cheers

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