When we Knew

Most often, babies are diagnosed with spina bifida around the 20 week ultrasound but our story was a little different. My whole pregnancy was a surprise and I was almost four months along before I knew I was pregnant. A couple of weeks later I had an ultrasound to find out how far along I was and at that point I was already 17 weeks! We also found out at the same time that it was another boy! The doctor said that he wanted us to come back at around 30 weeks for another one because he hadn't been able to see everything because he was still a little too small.

In that time frame we sold our house and a few days before we had to move went in for the ultrasound. We could see that the doctor kept measuring his head and looking at it a lot. Finally he told us that the head was measuring bigger that the body and, while it was still in the normal range, he wanted to have it checked out by the perinatologist at Utah Valley Medical Center (UVRMC).

We moved that weekend and the next Tuesday went to UVRMC for the ultrasound. I was 32 weeks along at that point. A tech first took all of the measurements and then showed them to the perinatologist. She then came in and did another ultrasound and then left for a little while. When she came back she sat down on her stool and told us that yes, the baby's head was measuring bigger and that it was serious, that he had hydrocephalus, or water on the brain, and that the reason he had it was because he had a very serious condition called spina bifida, or a hole in his spine. She was very straight forward about the diagnosis and just told us things in a very matter of fact way. That's okay with me, I prefer to have things said as they are, not sugar coated. She said that he would probably never walk, that the hole was very large and that he would probably have bowel and bladder issues as well.

I will always remember how I felt as I lay there half-sitting on the table with Carlos by my left side. It is one of those surreal moments when you feel as if you are in another realm, being sucked into a hole and hearing the words as if you are in the bottom of a deep tunnel.

After giving us some time to ourselves, she talked to us some more and then had us go and talk to the genetic counselor. We were given some information but nothing that was really sufficient enough to accurately inform us of all that we would be facing. It was all mostly information on the medical "facts" of spina bifida and a couple of websites we could check out. The problem with that is that things have changed a lot in the last twenty years yet a lot of the information out there is very outdated and worst case scenario. Googling spina bifida and hydrocephalus is enough to scare the wits out of anyone. So after the diagnoses of spina bifida, most parents are terrified and so afraid of all of the unknowns. I will expand on this further in another post.

After the hospital we went home and told Carlos' mom who was living with us and then Carlos called and talked to my dad. We are so thankful for the wisdom and advice he gave us, for his spiritual strength and closeness to our Heavenly Father.
I think that we both knew, somehow, that this baby was going to be special--even before getting the diagnosis. We knew he had to come to our family and when we heard the challenges he would have, although devastated, we were also comforted and felt a measure of peace.