Cole

My husband and I had tried to conceive for about 3 years. The morning of December 7, 2004, we received the miraculous news that we were pregnant, and so our journey began. We had no idea on that winter morning what a wonderful journey it would prove to be.

My pregnancy was pretty uneventful, with the exception of some morning sickness, things were moving along as planned. In February, 2005, I had my 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. My ratio was 1 in 95 that I 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. I secretly had been praying for a little boy. 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’. I’ve been a nurse for 17 years, but at that moment, I was just an expectant mother hearing horrible news. The worst kind of news. 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 husband 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 I 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 our neurosurgeon, Dr. Thomas Steineke. 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 kids with hydro can and do lead very normal lives. I remember when my husband asked if Cole would be able to play sports, Dr. Steineke answered “no restrictions.” Was it going to be easy? No way! And so surgery would be the day after Cole was born.

On July 25, 2005 at 8:11am our little miracle baby came into the world. Weighing just 7lbs, 4 ounces and receiving Apgar scores of 8 and 9, the baby all the doctors said wouldn’t survive was here. Yes, he was born with a little ear on his right side and hydrocephalus, but to us and everyone who would come to know him, he was perfect in every way.

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 31, 2005, Cole came home with us and we had the chance to enjoy Cole for the next 8 weeks. He grew and developed like any other baby and was a joy to us.

One late night in September, he spiked a fever and we had to rush him to the ER. This was the beginning of Cole’s first shunt infection. I remember Dr. Steineke coming in to tell us the shunt had to be removed and explaining to us the procedure and what to expect. Cole was to have his shunt removed, be externalized and receive IV antibiotics for at least 8 weeks. But in true Cole fashion, he soared through the surgeries and hospitalization. 10 days that time. Much to our doctors’ surprise, Cole wasn’t draining as much CSF as they though he might, 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, Dr. Steineke suggested he do an Endoscopic Third Ventriculostomy or ETV. An ETV is a very risky and dangerous surgery, but it 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 and celebrate Halloween. But again, Cole’s head started to increase in size very quickly. In mid-November, Cole 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. Like the first try, the ETV didn’t work and by mid-December we were back in the hospital. This time for a second shunt placement. Surgery went great but after about 36 hours Cole still hadn’t woken up and his head was filling with fluid. Cole was taken down for an emergency shunt revision and his third shunt placement in just 4 months. Cole pulled through with a smile, as usual, and by the end of the week was able to come home with us; 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 began to sit up on his own, was holding his sippy cup and even trying out some cookies! Then, on Memorial Day weekend we noticed that Cole’s shunt seemed to be swollen and filled with fluid. On Tuesday, May 30, 2006 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 caused by a yeast infection in his belly. 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 his Daddy.

We had just about 15 months of excellent health and then Cole had to have his 11th brain surgery. He was born with a small dermoid cyst on his nose, which, unfortunately, had a connection to his brain. For a child with a shunt and hydrocephalus, this could prove to be deadly if he were to get any kind of sinus infection. So, on September 11th, 2007, Cole underwent a 7 hour brain surgery to remove the cyst in his brain and the track to his nose. After only 3 days in the hospital, he was on his way home and since then, there’s been no stopping him.

Cole has been doing remarkably well. He took a slight setback after that long hospital stay in June 2006, but has been working very hard to get back to where he was and to move forward. Now, nearly 2 years later, he has accomplished sitting up unassisted, rolling over, pulling up to stand up and finally WALKING! Cole receives physical therapy and occupational therapy once a week and he enjoys 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 remember 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, and he would have Goldenhar Syndrome due to his little ear, and have kidney problems. They said he would have NO quality of life. They told us we could try again and have another baby. Well, the doctors couldn’t have been more wrong, because Cole is none of those things and has none of those diagnoses, with the exception of Hydrocephalus of course. We thank God everyday we didn’t listen to those doctors.

Cole is the greatest gift that we could have ever received and our lives are so much better now that Cole is a part of our life. Cole continues to amaze and inspire us on a daily basis and we hope he will amaze and inspire you too.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.