Back to Stories

Liam's Story

"We were super excited to find out in 2006 that we were expecting our second child..."

To say that the pregnancy was a roller coaster ride is putting it mildly. When I was 11 weeks pregnant, I was carrying our older son Jamie down the stairs when I fell and broke my ankle. I had to get an x-ray and that worried me so much at that time. I was in a boot for 9 weeks. I finally got that worked out and it was time for our 20 week ultrasound. We were really hoping for a girl. When she said it's a boy I was a little bit disappointed. Boy did that seem selfish of me!

She was taking a really long time and kept looking really hard at something. Finally she said I'm going to take a few pics and get the Doctor in here to talk to you for a minute. The conclusion they came to was that they were not seeing a stomach bubble. I was devastated! They sent me to a high risk OB and we had another ultrasound at 32 weeks. 12 weeks of not even knowing if my baby had a stomach! When we went back we were very happy to realize that our son did indeed have a stomach, but there were a few things off with his brain. They could not find the Corpus Colosum (the matter the separates the right half from the left half). They then decided to do a TORCH test. We were told to come back at 36 weeks and they would do another ultrasound.

They said the results for our TORCH test showed that I had probably picked up a common virus and it was nothing to worry about. They just skimmed right over the results. The repeat ultrasound showed that our son had Hydrocephalus. They said all they could really do was to monitor me until I was closer to delivering, that I would be induced at a local hospital that was right next door the leading children's hospital in the area. He would go the day after being born to get an MRI and probably just have to get a shunt put in and all would be ok.

I was induced on February 5, 2007 and Liam Patrick was born on February 6, 2007 at 10:52 am. It was a very easy delivery. When he came out one of the first things I noticed were these little red freckles all over his body. He was acting fine though so I got to hold him for 10 minutes and he nursed like a champ. They then took him to the nursery for about 2 hours. Everything seemed to be going well. The freckles were an indicator that he had a low platelet count but they were not really worried right then.

Liam stayed with us all night and the next day he was sedated for his MRI. As soon as the Doctor came in after the procedure, I just knew something was not right. He said the good news was that Liam did not have Hydrocephalus and did not need a shunt. The bad news was that the MRI showed significant brain scarring or calcifications on the brain. Two parts of his brain were underdeveloped. They were going to test for a virus called CMV. I had no clue what that was. I do remember having a slight cold around the 34 week period of my pregnancy. Something I probably picked up from my older son or another kid at one of the playgroups we attended.

All the markers Liam had pointed straight to him having it. They laid all the things that could be wrong with him throughout his life and I remember just holding him and sobbing. How could something that I caught make it that he could not hear, see, walk, talk, or so many other things?! We then just took the wait and see approach that I had throughout my whole pregnancy. He will be who is and we will love him for it and if he does these things then he does, if not oh well. He is our child and we will do anything in our power to see he gets anything he needs.

They kept him in the hospital for 5 days. He had Hepatitis and an enlarged spleen. They got his jaundice under control with some meds. Kept him hydrated by feeding formula from a medicine cup after we were done nursing. He failed the newborn hearing test and in my heart I knew he could not hear me. The month after he was released I went straight to Early Intervention and started getting him services. I knew if he was going to be all he could be we needed to start early.

He got tubes in his ears at 4 months and we got the news he was deaf in both ears. He got hearing aids at 6 months and they did nothing for him. He got a Cochlear Implant at 12 months and though he is making strides in communication we have decided not to get his other ear done. We are working with many devices to get his needs met communication wise. He did not lift his head up until 9 months and did not crawl until 18 months. He started with a gait trainer at the age of 2 and it was a slow start but he soon discovered its uses. He has since moved on to walking with forearm crutches primarily and will walk with one hand held. Liam can also walk independently in the water of a pool! I'm hoping that soon he will take off on his own. He did not feed himself food until 20 months. He nursed for 17 months and did not drink from a cup until 24 months. He still has to drink from a sippy cup. He was diagnosed with hypertonic Cerebral Palsy at 2. Liam attends therapy 3 times a week. This year he has really taken off with all sorts of new skills!

I know things could have been worse for us. Every challenge that presents itself, we do anything we can do to conquer it for Liam. He is a bright light in our life just the way he is. Liam started school in the fall of 2009. He is in his second year of a all special needs school and is learning so much new stuff! His teachers continue to be blown away by his progress.

I tell every pregnant woman I know to get tested. I was so blindsided and had never heard about CMV. I sometimes think back to what I could have done differently. I don't know if there is something. I know God gave us Liam for a reason. I look at his smiling face everyday and find nothing but joy.

- Shared by his mother, Polly

Back to Stories