Ashley & Zach

Moebius Syndrome - Zach

Moebius Syndrome – My name is Ashley. When I was 21 yrs old I got pregnant with my son Zachary. My husband and I hadn’t been married long in fact right after we got married he was shipped out on a 15 month tour to Iraq. He got his leave in August and that’s when we got pregnant with our son Zachary. I found out about the pregnancy a couple of weeks after he left to go back to Iraq for the rest of his tour. I found out at 16 weeks that we would be having a little boy but I also found out that our son was going to be born with a left clubbed foot. This gave us time to do our research on the clubfoot so that we weren’t out of the loop on what to expect after Zachary’s birth. My husband had just got home from his 15 month tour in Iraq and at about 34 weeks and he was able to finally go to a Dr’s appointment with me. We found out then that I was measuring smaller than I should have been. Come to find out I was measuring at 29 weeks so we had an ultrasound done at 35 weeks to see the size of the baby. This was the first ultrasound my husband had ever been to so of course he had a ton of questions. After that ultrasound we decided to go ahead with an induction at 38 weeks because we felt that it would be the safest thing for the baby and me. The Dr’s told us that he would probably be no bigger than a 5 pound bag of sugar. I went back in 2 weeks later which was the 6th of May to have a NST and a fluid check done. I was 37 weeks and 7 days and it was then that the Dr’s told me I couldn’t leave the hospital because there wasn’t enough fluid around the baby so it was that night we were going to have to induce. I called my mom to tell her what was going on and she was at work, so she left to go home and pack a bag to be at the birth to support me and my husband. I then called my husband who was working on base not even 5 minutes from the hospital. I told him what was going on and that I needed him to go home and get our bags to bring to the hospital. We grabbed a bite to eat in the cafeteria then headed up to L&D. They took me in to triage at 715pm and to my room at 730pm when they started my pitocin. Six hours into the induction I asked for my epidural for the pain, which never kicked in. Right after the epidural my labor sped up, I went from 3cm to 10cm in 45 minutes and it was time to push. I ended up having Zachary at 145am on the 7th of May. Everyone was panicking when Zachary was born due to he was blue then started to cry. His eyes were at pinpoint so they thought that he may have been blind which, thankfully, he wasn’t. It took a good 10 minutes after his birth before we could hear his tiny little cry and after about an hour his eyes fixed to how they were supposed to be. Zachary weighed in at 5 pounds and 2 ounces 17.5 inches long. They started genetic testing at birth because he wasn’t blinking and he had so many abnormalities. All of the test came back normal, but they were unable to diagnose him at Womack Army Medical Center. They transferred him to UNC Hospital where they did more testing. The Dr’s kept telling us that he has trisomy 13 and trisomy 21, which the tests for them came back normal. He was unable to suck from a bottle, so they had to try him out on a ton of bottles before they found the one that would work, which was the pigeon nipple bottle. After that we began a long and rough road. I had Chaplin Moore from my husband’s old unit come and spend a few hours with me the night before my son’s first of many operations. Zachary had a G-tube operation at 4 weeks, followed by 2 hernia repairs at 5 weeks. At 8 weeks we found out that Zachary was aspirating his formula so he had to be put on a Thick-It gel to keep him from aspirating. Zach then had the frenulum from under his tongue removed at 5 months, along with a set of pe tubes being placed in his ears. Over the years he went through 4 more sets of pe tubes in his ears, 2 foot operations for his clubbed foot, extra frenulum from under his cheeks that were connecting to his gums removed, another hernia fixed, and 2 different times tacking down one of his testicles. He has also ended up having 2 eye surgeries and will be having a 3rd eye operation in a few months. We have a ton of medical equipment, one being a medical walker that he uses to get around, hearing aids for his mild hearing loss, the ponseti brace for his clubfoot and night time brace for his scoliosis and AFO’s to support his ankles since they are so weak from the clubfoot. We were told when he was about 3 months old that they thought he had Moebius Syndrome but didn’t know for sure until he was 8 months old when we PCS’d to Fort Carson and had his medical records transferred. That is when we found out that they positively diagnosed him with Moebius Syndrome. Today Zachary is a happy and healthy little boy who is 3 and a half years old and in preschool. He’s been through a lot to be such a little boy but I wouldn’t change a thing about him. If there was one thing that I could change about him though, it would be all the operations he has endured in the last 3 years. Come December he will have his 18th procedure and I wish he didn’t need it but we know that it will help him in the long run.

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