My "Special" Child

by Jana Lewallen/Buggles

I have three children. I will always have three children even though one of them is not with us. My second child, Raymond "Drew," is dead.

I know that it might sound cold to just blurt it out like that, but that is the way things are. Drew is dead. He is my special child.

When I was 18.5 weeks pregnant with this child that was tried for and so wanted, my husband, daughter and I went for my routine ultrasound. Various medical personnel kept coming in to look at the screen. We were told that they could not get a good view of all four chambers of the heart. My husband and I could see them, so why couldn't they?

Three days later, we were told that our son had a condition known as a congenital diaphragmatic hernia. His odds of survival were 50/50. We were given information on the condition; the diaphragm did not completely form and his abdominal organs were in his chest, severely stunting lung growth and development. We were told we had a decision to make: to continue the pregnancy or to terminate it.

After an agonizing night of research, tears, discussion among us and emotion, we decided that termination was not an option for us. We were going to give Drew every chance at life.

What followed were months of ultrasounds, perinatologist appointments, visits with pediatric surgeons, tours of NICU's, twice weekly non-stress tests, the list goes on and on.

I planned Drew's funeral while I was pregnant. I knew that if the unthinkable happened, I would be in no state of mind to plan one at that time.

It was decided that I would be induced at 38.5 weeks gestation. Things did not go as planned and Drew's birth ended in a C-section. I heard two very weak cries before he was intubated and whisked away to the Special Care Nursery. It was the only time I ever had the chance to hear his voice and I never got to see him. My husband told me that Drew was purple. The doctors took my husband out into the hall to talk to him, leaving me on the operating table, sobbing. My husband returned with tears in his eyes and told me that things did not look good.

A few hours after his birth, Drew was brought to my room before his transfer to the NICU at OU Children's Hospital. I touched his hand and spoke to him and the most amazing thing happened: he turned his head to me and opened his eyes. This was quite a feat with all of the medical equipment already strapped on him.

High risk NICU's are not cheerful, happy places. Drew was in a special room known as the "ECMO Room." This is where the most critical babies are put; babies who are agitated by sound and need medical equipment that takes up a lot of space. It is a semi-private room separate from the big rooms with up to twenty beds.

At about 30 hours old, Drew was placed on ECMO, extra corporeal membrane oxygenation. That is, he was placed on heart/lung bypass. The surgery was done right in the NICU. Only 1 in 3 kids ever come off of ECMO. Drew did after 15 days. He was such a fighter!

He had surgery at three weeks of age to move his organs and repair the hole in his diaphragm. Things were so promising that I allowed myself to go shop for some clothes for him!

From the time of his birth, I was pumping breast milk and taking it to the NICU. Drew could not have any but I was determined that when he was able, he would get the best I could give him. He ended up getting feeding via a tube directly to his stomach for less than 24 hours. He received less than 10 cc's of my milk (and that's a generous estimate).

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