My Lavender is actually a twin. She was diagnosed with congenital hydrocephalus at 16 weeks gestation during a routine ultrasound. I immediately knew something was wrong when I saw her image, because her head was showing nothing on the scan and the doc asked what I thought, and she said I was right. Lavender also was diagnosed with scoliosis at this time. It was recommended that I terminated 'this fetus', but I could not bring myself to harm my precious baby. At 22 weeks I had a fetal mri at Children's Hospital of Philadelphia's Fetal Diagnostics Center.
They told me Lavender had gross hydrocephalus, less than half of her brain, scoliosis with hemiverts and possibly other birth defects that would not be visible until birth. They said they strongly suggested I have a 'selective reduction' to reduce stress on the other fetus, because Lavender would most likely not survive to full term. They said if she survived birth, she would most likely be a limp, lifeless child, possibly dependent on ventilators, that she definitely would be shunted to relieve the pressure in her head due to the hydrocephalus. Still, in my heart, I knew they were wrong, because she moved like the other baby, responded to my voice like the other baby, even to light and foods that I ate..just like her sister. I started to learn all of the latest news and procedures on hydrocephalus.
At 36 weeks, which is considered full term by obstetricians, and after a lung maturity test, my girls were delivered by c-section. Lavender came out kicking, screaming, all four limbs, eyes open, breathing on her own, bright pink, ALIVE, and highly responsive, looking all around, immediately responding to my voice. A small surprise was pointed out to me; her left ear looked as if someone had taken a bite out of it..not bleeding or anything. It was just formed that way. Lavender was able to nurse, but she had a very very large head; 17 cm, and the increased intracranial pressure probably made her very tired, and who knows-maybe even nauseous, so she only ate about 1/2 of what her sister would eat.
The very next morning she was transferred to Children's Hospital of Philadelphia for Shunting. It was very very hard, because I had one baby with me, recovering from a c-section, and my other precious baby, was across town, in another hospital. So Daddy went to stay mostly with Lavender, which was good, because she crashed once after recovering from surgery. (I was not told this until coming home from the hospital. I had suffered a post op ileus also.) But I called constantly and talked to her nurse, and Daddy came every day and relayed the news.
When Baby sister and I came home from the hospital to Lavender's big Brother, the first thing we did was go to the NICCU at CHOP to see Lavender. As I sat there with my baby, that I hadn't held for 6 days, all of these people form GENETICS were asking me questions like: "Have you or your husband been exposed to chemicals, or been to Iraq, etc." All answers were no, of course.
They told me the reason they were asking is because my baby also has a syndrome called "Goldenhars". This is why her ear is misshapen, as well as the bones in her spine, and the whole left side of her face is ever so much smaller than the right. She looked so wonderful, except for the bump on the side of her head. Her shunt meatus was leaking under her scalp. We were told this was positional, and at home, to keep her head up and it would go away.
We kept Lavender's head up, very well, but the bump grew. This led to a very long 6 week stay at CHOP with 2 shunt revisions, including a shunt externalization. This was to let the bump go away on her scalp so the skin would reattach on her head. Then 6 weeks later we went home, 2 weeks later...back again for some IV antibiotics overnight...4 weeks later to have the old scar cleaned out and restitched. Then everything was wonderful for about 2 years....
CHOP helped us enroll Lavender in early intervention. Lavender had therapists come to see her at home. The showed us ways to help strengthen the muscles in her neck to hold her head, in fun ways. The therapists, as well as all the people who ever worked with Lavender are amazed when we tell them the story about her brain, and her early prognosis infetu. They cannot believe it. She has always been within the physical and developmental norms with the exceptions of holding up her head. She was discharged from early intervention before her 2nd birthday.
Lavender began having grand mal seizures with the flu. She was put on Keppra. Keppra is a wonder for Lavender. She has had no negative side effects, that I can tell, so far, and no seizures, except an occasional, conscious leg twitch, at night, that wakes her up. Lavender also had a shunt malfunction 2 years ago...so far, so good, with the replacement.
My lovely Lavender today is almost 5 years old. She wants to go to kindergarten with Dora. She had a wish granted and went to the Florida Keys. She loves to dance like a ballerina and read, use the computer and play word games on www.starfall.com!
Water and swimming and dolphins are her very favorite things in this world. On a summery stormy day, Lavender loves to dance in a downpour! She has spited every person who ever dared to say what she would be.
She says when she grows up, she wants to be an outer space person! You gotta love that!