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, 2007. 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 and he had an angiogram. After the angiogram we heard the diagnosis of 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.

Danielle Gilbert
Danny’s Proud Mom

Update

On August 28, 2008 Danny had his second coil and embolization at Cleveland Clinic in Cleveland, Ohio. Dr. Thomas Masaryk performed his surgery. All went well. I realized I don't like watching them put my baby to sleep. Danny was intubated for about 4 hours and came out with a catheter and arterial line and periphereal iv. He slept all day waking up once in terrible pain. So he got pain medication and they took out his cateter and arterial line and he went back to sleep. He woke up in the morning back to his old self and we were set for discharge. We are just to let them know if Danny has any problems like he did before.

But the staff was wonderful this time, they took great care of us and we feel good about this doctor. He doesnt want danny to have follow up MRI or angio since he feels he knows the layout of the malformation and the testing just puts danny under anestesia unnessesarily. So thanks to thoughts and prayers we have another year off. Dr Masaryk thinks that this one has shut down enough flow that we wont need to worry about a bleed from his misshapen draining vessel. But he also feels that there are some other vessels amenable to embolization so we will go back in 6mo to a year for his third. And maybe that will be the last.

Thank you to all for your thoughts and prayers. I know Dan and I couldn't have done it without all of you. Going through it all again brings it all back. If anyone wants to talk feel free to email me at danielleglbrt00@yahoo.com I would be happy to share our experience with you.