I’ll never forget that day I was five months pregnant with twins... shopping in target... when my doctor called me. She said Baby B has a condition called hydrocephalus. Then she went on to explain what this condition is (basically it’s “water on the brain”... a blockage that prevents fluid from circulating in the brain... causing the brain to swell. The fix is to have brain surgery to insert a shunt. The only problem is... shunts malfunction all the time! And that means surgery after surgery to relieve the pressure in the patient’s head.) But all I heard was brain swelling and brain surgery... and my head was spinning. I left everything in my cart, left the store and cried in the car.
So the rest of my pregnancy was spent constantly visiting doctors’ offices, interviewing neurosurgeons to decide who was going to perform brain surgery on my newborn and getting extra tests. Through several sonograms, the doctors were monitoring the size of Baby B’s head. Finally my high-risk doctor sent me to a radiologist to get an MRI. Now if you’ve ever had an MRI you know how loud it is. So here I am, probably six months pregnant at this time, with twins, laying down in an MRI machine... and the noise is just causing the babies to move like crazy. I think it took 45 minutes before the technician was satisfied with the picture she got. Then it turned into one of the worst days of my life... when the radiologist decided to sit me down and tell me hydrocephalus was the least of my problems because parts of the babies brain were missing!
Fortunately... that radiologist was wrong! He still ruined the rest of my pregnancy. I was told to prepare for physical and mental disabilities. I remember my boss at the time told me “God only gives you what you can handle.“ But, of course, I didn’t feel that way. I didn’t know how my husband and I were going to get through this.
Fast forward three months... or nearly 3 months... the boys were born 2 and a half weeks early. Of course my C-section was scheduled for 4 days later. So my husband had to rush me to the hospital in the city in horrible weather... rain and fog at 1 o’clock in the morning. I was in severe pain the whole way. By the time we got to the hospital, I was already 10 centimeters. But since Baby B had hydrocephalus, the doctor still had to perform a C-section. My boys were born just after 2 AM. I remember Baby B looked so red ... while Baby A was white as a ghost. We like to believe that Baby A was protecting his little brother by giving him all of his blood. A few hours later in the morning ... the neurosurgeon came into my hospital room and told my husband and me that he was NOT going to perform surgery. He said while Baby B still had hydrocephalus... it was only a partial blockage so he just wanted to monitor it with regular MRIs. Baby B is now 8 1/2 years old and in third grade. He has never had to have surgery.
We owe a lot to the hydrocephalus association on Long Island. They helped my husband and me get through the pregnancy. While their lives are not easy, having children who have to undergo several brain surgeries, sometimes several each year, their children are still normal children who lead, for the most part, normal lives. So every year, in September, my family and I participate in the hydrocephalus walk out in Suffolk county where we raise money to find a cure. The wonderful families involved in the association gave so much to me- so now I give back to them. I know there are many great causes out there... many fundraisers to donate to... but this one, obviously, means so much to me. As they say in the hydrocephalus community, no more BS! The BS stands for brain surgeries. And hopefully, that’s what we will accomplish by raising money for research. #NoMoreBS
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