On July 25th, 2005 at 8:11am our little miracle baby came into the world. Weighing just 7lbs, 4 oz, and receiving Apgar scores of 8 and 9, the baby we were told to abort and then told wouldn’t survive if we didn’t abort, went immediately to the “well” nursery. Yes, he was born with a little ear and hydrocephalus, but to us and everyone who would come to know him, he was perfect in every way.

Let me back up to February, 2005, when my wife had her first Trimester Screening. This is a screening test to give the expectant mother a statistic of her chance of having a baby with Down Syndrome. Her ratio was 1 in 95 that we would have a baby with Down syndrome. We were offered Genetic Counseling at that time, but we declined. We considered that ratio to mean to us that we had 94 out of 95 chances to have a perfectly healthy baby. Pretty good odds if you asked us!

We had scheduled to have our Level II ultrasound done on March 21, 2005. We were planning to have a small family gathering at our home that evening where we would announce to everyone the sex of our baby. We were excited beyond belief to finally be having the baby we had wished for. The ultrasound went on for quite a while as they took all kinds of measurements and checked every organ. The technician asked us if we wanted to know the sex and of course we did. “It’s a boy!” We could not have been happier. When the technician was done, the Perinatologist entered the room and from that moment on, our lives, and our little baby’s life would never be the same again.

I think as I was hearing her words, I wasn’t really listening to what she was saying. It was almost surreal, as if I was dreaming. I heard terms like ‘enlarged ventricles’, ‘Down syndrome’, ‘enlarged kidneys’. The doctor went on to advise us that we should consider terminating our baby. She told us that our baby would have no quality of life, would be severely mentally retarded, and would have a 1 in 3 chance of having Down syndrome. Terminate your baby.

While my wife and I sat in complete shock, they brought in a Genetic Counselor to explain to us exactly what our baby had been diagnosed with. “Your baby has venticulomegaly”, she said. We were told again to terminate the pregnancy. We were even advised where to go in other states where it is completely legal after 24 weeks. I can tell you at that moment, no matter what they said was going to be wrong with our baby, there was no way on earth we would have considered termination.

This was our child and we would do all we could for him. We decided that evening, after cancelling our party with our family, to get an appointment as soon as possible with another Perinatologist for a second opinion. We were lucky to get an appointment for the following Wednesday, just 2 days after the initial news. The doctor we saw this time was a bit more positive, but confirmed all the same diagnoses as the first doctor. This doctor also recommended that we have a fetal MRI, which my wife did have around the first week of April. The fetal MRI confirmed much of what we already knew. Our baby boy would be born with Hydrocephalus, most likely due to Aqueductal Stenosis. The rest was unknown. We would just have to wait.

At the end of June, we were very fortunate to find Dr. Thomas Steineke and the NJ Neuroscience Institute at JFK Medical Center. My wife’s OB had said that Dr. Steineke had come highly recommended and after doing much of our own research we set up a consultation with him. Dr. Steineke reviewed the fetal MRI we had and the many ultrasound reports we had brought with us. He also confirmed the diagnosis of Hydrocephalus. He explained in great detail all about shunts and what to expect. He put our minds at ease. I remember that day so well when he told us that Cole was going to be ok and that kid’s with hydrocephalus can, and do lead very normal lives. Was it going to be easy? No way! And so surgery would be the day after Cole was born.

Cole was born on July 25th 2005, and on the second day of his life, Cole had his first shunt placed. He came through surgery with flying colors. But like a lot of newborns he developed jaundice and had to stay in the hospital a couple of extra days. Finally, on July 31st, Cole came home with us!

We had the chance to enjoy Cole for the next 8 weeks. He grew and developed like any other baby and was a joy!

And then one late night in September, he spiked a fever and we had to rush him to the ER. This was Cole’s first shunt infection. He had to have his shunt removed, be externalized, and receive IV antibiotics for 8 weeks! But in true Cole fashion, he soared through the surgeries and hospitalization. 10 days that time. Much to the doctors’ surprise, Cole wasn’t draining as much CSF as they thought, so we were allowed to take Cole home without his shunt. We believed this was truly a miracle. But after only a week, Cole’s head began to grow rapidly and we were back in the hospital. This time though, the NS decided to do an Endoscopic Third Ventriculostomy or ETV. A very risky and dangerous surgery, but would give Cole the chance to live a shunt free life. We felt we had no choice but to try.

Cole was doing great for a few weeks. He was able to be Christened, (I’m Jewish and my wife is Catholic), and celebrate Halloween.

But again, Cole’s head started to increase in size very quickly. In mid-November, he underwent a second ETV. He only had to stay a few days in the hospital this time and was able to be home with us in time for his first Thanksgiving.

But, like the first try, the ETV didn’t work and by mid-December we were back in the hospital for his second shunt placement. Surgery went great but after about 36 hours Cole still hadn’t woken up, AND his head was growing and filling with fluid. Back he went down for emergency shunt revision and his third shunt in 4 1/2 months. As usual, Cole pulled through with a smile and by the end of the week, was able to come home. Just in time for his first Christmas!

The next 6 months were the greatest ever. Cole remained healthy and was thriving. He started to reach his developmental milestones. He was able to sit up on his own and was holding his sippy cup, and even enjoying cookies!

Then, on Memorial Day weekend of 2006, we noticed that Cole’s shunt seemed to be swollen and filled with fluid. On Tuesday May 30th, Cole was admitted to the hospital for observation and what we thought would be a simple shunt revision. It turned out that Cole had a very serious shunt infection. He was hospitalized for 3 weeks this time and had 4 surgeries while there, including a PICC line. But, once again, Cole came through it all with a smile.

Cole was able to make it home just in time for his first Father’s Day with me. Since then, Cole has been doing remarkably well. He took a slight setback but has been working very hard to get back to where he was and continue to move forward. Now, 10 months after his last hospital stay, he can sit up unassisted, can roll over, and is beginning to stand up and take some steps.

Cole receives physical therapy twice a week, occupational therapy once a week and has just started to enjoy a weekly music class with other toddlers. He smiles all the time and is such a joy to be around.

We can’t help but think about that fateful day back in March 2005 when the doctors told us that our baby wouldn’t survive. They told us to terminate the pregnancy. They said he wouldn’t eat on his own, wouldn’t breathe on his own. He wouldn’t hear, he would be severely retarded, he would most likely have Down Syndrome in addition to Goldenhar Syndrome and kidney problems.

He would have NO QUALITY OF LIFE. They told us we could try again, have another baby. Cole is NONE of those things!! They couldn’t have been more wrong.

We thank God everyday that we didn’t listen to those doctors. If we had, we would never know the love and joy that is Cole Daniel. He is the greatest gift that we could have ever received and our life is so much better now that Cole is a part of it.

We can only hope that the next year is filled with as much love and happiness and that Cole continues to THRIVE!!! He is truly our little miracle.