The J.P. Story: Uncertainty before birth

Dad’s note: In honor of J.P.’s 12th birthday, I’m beginning “The J.P. Story,” which looks back at our journey through birth and now approaching teen-hood. I hope you enjoy. The first chapter looks at life before the trip to the delivery room.

It came as no surprise that J.P. would be born with significant challenges.

Paige and I learned with his first ultrasound that our boy’s brain did not form correctly in his very first days in the womb.

The doctors told Paige and I that our child had holoprosencephaly, and we looked at them with a blank look on our faces and said holoprosen-what?

Even in 2002, I remember the first thing I did was attempt to use the Internet to find out exactly what holoprosencephaly was and whether he could live with it.

We knew before we were given the diagnosis that something wasn’t right. We went from the ultrasound to a hospital for an immediate second ultrasound and then a third ultrasound at a children’s hospital.

I’ll never forget what happened at that point. We were told that Paige needed to be immediately admitted because carrying J.P. to term could put her at a significant health risk. They said she needed to be admitted now because the law would only allow the pregnancy to be terminated for a few more days.

I immediately thought back to all we had been through to get to that point.

We had tried several times to have a child without success. We had talked to the doctors who said they found no problem with either Paige or me that would prohibit a good pregnancy. We were simply told to keep trying and everything should be OK.

We were planning to travel to see my sister and her family in Louisiana to get everything we would need for our baby’s arrival, including clothes, a crib, books, etc.

My sister has three children, and we were ready for one and maybe more.

But everything instantly changed.

Instead of preparing for the trip to visit family and celebrate the arrival of the first Cousins’ baby, we were being asked to make an instantaneous decision to terminate him.

As we were being asked whether we wanted to be admitted, I remember the doctor looking at the pictures and saying to me, “For a boy with holoprosencephaly, I see no deformities. That’s unusual. He looks great.”

I admit I was scared. I was being told Paige’s life was at risk. I wasn’t sure why her life was at risk, but I worried about the chance of losing the two people closest to me.

It was probably the scariest moment of my life. I felt lost and pressured, and I wasn’t even a father yet. I didn’t know what to say. Paige told me she felt very similar but more insistent on protecting the baby.

How could we be asked to make such a major decision so quickly? These doctors and nurses were giving no consideration to our baby at all, and that raised big concerns in both of us.

We were touched that Paige’s longtime friend, Kimberly Hansen, was already on the way from Jacksonville to comfort her.

We managed to fight our way out of the hospital and began dissecting what we were told. We talked to our church and our loved ones, and I finally got my big question answered.

Despite being told that Paige was putting her health at risk by continuing to carry our child, she was actually not at any greater risk than any other mother carrying a baby.

The doctors only said the risk was greater because the baby wasn’t expected to have any quality of life, so even the normal risk wasn’t worth taking in their eyes. Big difference in my eyes.

We began thinking about the journey ahead. We were told the baby wouldn’t make it to term in all likelihood. If he was born, he may live a few minutes or a few hours.

Our Married Young Adult Ministry group at Northland Church rallied around us and vowed to be there every step of the way.

We decided not to put together a nursery. If we were lucky enough to bring our baby home, we would deal with it after he was born.

We also made a decision that the baby we were calling Peanut would be John Paige, my middle name and my wife’s middle name. He would always be part of us — and we would be part of him — no matter how long he lived.

We also decided he would be called J.P.

The biggest decision we had to make was how to handle the birth. With input from everyone, we decided that we would let God decide what he wanted for J.P.

If God wanted to take him before birth, he would do it. If God wanted J.P. to be born alive, so be it. We vowed to give J.P. every opportunity possible to thrive, and we decided to do it at a hospital that would honor our wishes — Florida Hospital-Orlando.

We found a neonatologist who agreed with our plan and understood our unique situation.

It was just the first step on what we now know is a very special journey with a very special boy.

The doctor appointments, lab tests and ultrasounds became more frequent. We were asked several times to sign do-not-resuscitate orders, and we declined them. That was a decision we struggled with and learned, again, that since we were the parents, the decision could be made at any time.

There were prayers, tears and plenty of soul-searching until the scheduled delivery day came. August 28, 2002, but J.P. had a plan of his own.

Continue to Chapter 2: Waiting game begins