I have been talking to many of you for the better part of a year now and I have come to the realization that I have not yet shared Liam’s story on here. So, here we go.
I found out I was pregnant in August 2011. A month later, I had some bleeding and went to the hospital, afraid I was having a miscarriage. They did an ultrasound and altho I insisted I was 9 weeks pregnant, they said more like 4 or 5 weeks. This changing my due date continued throughout the pregnancy, however it was at the anatomy ultrasound that we first heard that there was an issue with his size. I was 21 weeks along, but he was measuring 16-17 weeks. I had just lost my father to his short battle with lung cancer 2 days prior to receiving this news. We refused to do an amnio because it didn’t matter to us if he had some genetic disorder or not and we weren’t willing to take a risk on hurting him on something we could just wait a few months to see for ourselves. the rest of my pregnancy consisted of many many many MANY ultrasounds to recheck growth and twice a week fetal monitoring. 6
until on April 3rd 2012, the Doctor said he had only gained 2 oz in 2 weeks and he wanted him out of me immediately. Well, sort of—- I was 34 weeks and they made me stay in the hospital in bed until I hit 36 weeks, and then they induced. on 4/12/2012 at 1:03 pm I gave birth to the most beautiful little boy I had ever laid eyes on. Liam Francis Donovan was 4lbs 6oz and 17 inches in length. He was breathing on his own and cried instantly. He received two 9’s on the Apgar and at first glance the only thing noted was minor hypospadias.7
Over the next few days we were told that genetics had come by to see him because they were curious as to why he was so small in utero, the hypospadias, and they felt his ears were lowset, but that we shouldn’t worry, they were sure it was nothing. Fast forward 2 months at our genetics follow up. I was told he had Wolf-Hirschhorn Syndrome and that he would be mentally retarded, never walk, never speak and he might not live to or past his first birthday. We did all of the testing to rule out this and that, aside from Epilepsy with complex partial seizures, Liam is a very healthy little miracle. He is now 16 months old and is orally fed, he can sit unassisted, he pulls to stand and he crawls. He is non verbal as of right now, but who knows what the future holds for our amazing little man. He is full of surprises everyday. We are currently learning sign language to try to increase our chances of communicating with Liam. Here are some pictures of Liam. Liam1
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7 Responses to Liam Francis Donovan

  1. shirley bidnick says:

    I am sorry about the loss of your father at such a difficult time. Grieving the death of a parent to cancer is emotionally devastatng. You are a very strong woman to cope with this while pregnant and refuse to have further genetic tests done on your baby. Your father raised a daughter with character and integrity. He must be proud of you and his grandson.

    Belated congratulations on the birth of your beautiful son. He is Liam the Halloween Monkey! With a double 9 Apgar start to life and you for his mom, the sky is the limit. He will prove all the doctor’s dire predictions wrong. It is unfortunate that physicians continue to say things like that. Thank God for this web site. What is it about WHS children that make them so loveable and loving? They will teach the world that different is good. Enjoy your lovely son!

  2. Letty says:

    He is precious and very lucky to have you as his mother!!! I’m so glad that he can sit, stand, and crawl unassisted. My son can’t YET. Our little ones will continue to prove all the outdated info on the internet and elsewhere. We, as parents are helping do so with our “posting” and “venting” practically everyday. Good luck to you and your family.

  3. Sarah says:

    Cheryl,

    I loved the pics and story of Liam. He looks like my daughter and seems to have similar progress. I would love to talk with you and trade stories/advice since you are a bit further along than Charlotte is. Please email me at mom2thebest4@aol.com if you are ever free to talk. Thanks!

  4. Sara says:

    Good for you for learning sign language. I wish more parents would.

  5. Anonymous says:

    Liam is so precious! I am so happy he is doing so great, he is very advanced for a whs kid. He is almost on a “normal” child track. Is it just me or whs boys are less affected by this syndrome than whs girls? Looks like all boys are way more advanced than girls. But anyway good luck to you guys! Hopefully my daughter will start crawling soon :)))

  6. thara says:

    Hold on a minute. You just wrote in a post Sept 2010 that you took Liam to therapy January 2010. Either you are lying (I hope not) or you got the dates muddled up. When was Liam born?

  7. Cheryl Donovan says:

    Theres more than one Liam here. Mine is Liam Francis Donovan. I only post with his full name for that reason. Youre confusing two Liams together. The other Liam is Jaynes son. My Liam was born 4/12/12 it says so in this post.

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