Support, Research and Advocacy for Rare and Special Families

MWS Stories

United States > Noah Wirgau

Our son Noah Scott Wirgau was born on June 25, 2012, in Alpena, MI. Noah was going to be our fourth child. We expected to have a healthy baby like our first three had been. To our surprise, during an ultrasound, we learned that Noah had a club foot. We had never heard of that before and were devastated. During my pregnancy I had about eight ultrasounds. Noah’s kidneys looked a bit large and there was an elevated amount of fluid in his brain. For both issues, I was told more then likely these things were just minor and that Noah was fine. I didn’t worry. I expected to have a healthy baby with the exception of his right club foot.

The day finally came to bring Noah into the world! We were so excited! My labor went very well. Noah was born at 4:15pm. He weighed 8lbs, 4oz. He was my smallest baby! I was never told his length. Everything seemed good at first. I got to hold him and tried breastfeeding. After a short time, the nurses took him to get him cleaned up, etc. The next thing I knew, there were a couple Pediatricians, in my room, telling me Noah was on oxygen. I was surprised to hear that. And I was a little worried. I got wheeled down to go see him. He looked so pitiful. While I was down there, the nurses told me some concerns that they had about my new baby boy. We knew Noah had the right club foot. The nurses also noticed he had a small chin, and some abnormalities with his genitalia. They didn’t seem overly concerned so I didn’t worry too much. After a while I went back to my room. The Pediatricians came back in a little while later and told me they decided to transport Noah. I was in total disbelief. I didn’t know how that could happen. I expected to be able to take him home. They told me, with the breathing issues he was having and the other abnormalities, they wanted to be safe. I had no idea what kind of ride we were in for!

Noah got transported to a hospital, in Saginaw, about three hours away. I was released and arrived there the next day, alone. It was very scary. My husband stayed home to care for our other three children. When I arrived, Noah no longer had an issue with his lungs. He now had an issue with his bowels. I had no idea what was happening. It was so much to take in. The doctor told me, he wasn’t sure what the problem was. Noah got hooked up to Replogle. Since his intestines weren’t working, he couldn’t have anything in his stomach. The Replogle was a tube that went from his mouth to his stomach. It sucked everything out of his stomach, continually.

I got to hold him a few times and I just cried. I was so scared. I just wanted to take that tube out of his mouth. It seemed so drastic and uncomfortable. Mostly, I wanted answers. I wanted to hear that he was going to be ok. Unfortunately, that’s not what I got.

One of the first days I was there, the doctor told me that Noah could actually be a girl. Because of his unusual genitalia. They needed to do a chromosome test to be sure he was a boy. That baffled me. I thought that was the craziest thing I had ever heard. I knew my entire pregnancy that he was boy and giving birth to him and holding him, he was obviously a boy. This was something I almost couldn’t handle.

Noah was at this hospital for 4/5 days and they still were not sure what was wrong with Noah’s bowels. The doctor told me he had either Cystic Fibrosis or Hirschsprung’s Disease. The doctor also told me there was certainly something majorly wrong with Noah. He told me by his facial features he had more going on. I was upset to hear that. I wondered what was wrong with Noah’s facial features. I thought he was beautiful! All of this was so much! Too much to bare. I stayed at a hospitality house nearby for these few days. I hardly ate and spend all of my time crying. I just couldn’t believe any of this. Those were the toughest days of my life.

I found out my Aunt was going to be passing through to go back to Alpena to visit her parents/my grandparents. She offered to come get me and take me home. I didn’t want to leave Noah but I was in such a bad place. I needed to see my husband and family and be able to take a breath. I was happy to get home.

The Saginaw hospital where Noah was called me to tell me they were going to transport Noah to the University of Michigan, Mott Children’s Hospital, in Ann Arbor, MI. That way he was able to be seen by all of the specialists he needed. The night before the transfer, I received a call in the middle of the night. The doctor in Saginaw wanted permission to insert a Broviac line. That was a line put in through his leg to essentially “feed” him. I approved the request, of course.

A couple days later, I drove the four hours to see my Noah at U of M. I drove on the freeway for the first time by myself. Thankfully it had gone well! The first day there was very overwhelming. The hospital was HUGE and completely overwhelming all by itself! And I had so many doctors and specialists visit and talk to me. It was A LOT to take in!

Also on the first day, I sat down and discussed my complete family history with the Geneticist. He told me by looking at Noah’s facial features and the suspicions of Hirschsprung’s, he believed Noah had something called Mowat-Wilson Syndrome. I said, “Ok”, not thinking much of it. Later that evening, I looked it up online at my Aunts house and was devastated. It said, “Mowat-Wilson Syndrome was associated with mental retardation, severe developmental delays, non-verbal, seizures” and the list went on. I was shocked by what my new reality might be. I called my husband to tell him and he said, “What are we going to do?” In our wildest dreams, we had no idea this could ever happen to us. We did a lot of questioning and praying!

The first thing they wanted to do, at Motts, was to figure out what was wrong with Noah’s bowels. They suspected Hirschsprung’s Disease but needed to do a biopsy to be sure. It took several days and several biopsies to get the official diagnosis. He did indeed have Hirschsprung’s. Also, the chromosome test results came in. Noah was indeed a BOY! Thank God!

The next thing the doctor discussed with me was surgery. They were sure if he had long segment or short segment Hirschsprung’s. They assumed it was long segment and had intended to do a Colostomy. To my surprise when they had wheeled him back from surgery, they were able to do the pull through! They removed the “bad” part of his colon and brought the good part down. That was wonderful news!!

After a couple days he did start to poop, a little, but was having issues on and off. To assist him, he was given rectal washouts.

The doctors thought it was time to try feeding Noah through his stomach. They inserted a NG tube through his nose that led to his stomach. They very slowly started to give him formula. He didn’t handle it well and started to throw up. After some additional testing, they realized he had Pyloric Stenosis. A couple days later, he had the surgery to correct that. Noah still struggled with the formula and continued to throw up feeds.

Over the next month, Noah had issues with his bowels and feeds. He was given rectal washouts to help with his bowels. The doctors also realized Noah had Reflux. That’s why he was throwing up. They started him on a few medications. It helped. We were trying to increase his feeds often. We still had to do rectal washouts daily. Each day was its own battle.

Along with his feeding and bowel issues, Noah received Physical Therapy. He would get his club foot stretched and casted often. He hated it! He would scream the entire time. I think he was so tired of being messed with. He wanted to be left alone.

Also during this time I was told new medical conditions that Noah had. I found out he had no Corpus Callosum, in his brain. That was heartbreaking, to hear your baby was missing a part of his brain. I cried. I was told Noah had an Axenfeld Anomaly, an issue with his eyes that could lead to Glaucoma. I wasn’t sure how much more I could take. It seemed the bad news just kept coming. I also found out both of Noah’s testicles were undescended and he had Hypospadias. Hypospadias was part of the abnormality with his genitalia. (To this day, Noah still has both issues. They have yet to be corrected.)

The day came, August 13th, when the results came in from Noah’s genetic testing. He did indeed have Mowat-Wilson Syndrome. In my heart I knew he did. I had already accepted it. I had 5 weeks to let it sink in. I knew he did so it wasn’t a surprise. But it was still devastating.

Towards the end of August, Noah was still up and down. He was still taking in feeds from his NG tube and getting rectal washouts. He was still throwing up a bit too. But this just seemed to be the norm for Noah. The doctors discussed discharging him. I had to get trained on how to put in the NG tube, do the rectal washouts and to do his dilation of his rectum as well. It was a lot but I was going to do anything to get him home! He had been in the hospital for two months!

Noah got discharged on August 31, 2012. I remember carrying him outside and him being able to feel the breeze. It was amazing! It was too late for a 4hr drive home we stayed at my Aunts and arrived home the next day. Our whole family was just elated. We had a huge “Welcome Home” banner we made. It was wonderful!

After weeks and months, Noah thrived. Coming home in the condition he did, he made it. He had no hospital stays after that. For his club foot, he saw a doctor here and had serial casts done to straighten his foot and had his heel cord cut. After that was a success, he received a Ponsetti bar to wear at night to keep his foot straight. Also, we maintained his feeds and washouts. It was the norm for us. He eventually, slowly started using a bottle. Very slowly he would take more by mouth and we’d give him less by his pump/NG. After about ten months, Noah was off the NG tube. He was drinking from his bottle and eating baby food! That was SO wonderful! A couple months later, Noah’s bowels were working enough on their own and we quit doing the rectal washouts! We were so proud of the progress he had made!

Noah began receiving PT and Early On services when he was about 3 months old. A Special Ed teacher and a PT would come a few times a week to work with Noah on his development. Noah made progress. It was slow but it was on Noah’s time. He started rolling over when he was 1. He started sitting unassisted when he was about 1 1/2. He started crawling when he was about 2. His crawl is/was not a typical crawl, it’s more of a bunny hop.

Noah’s currently 2 1/2 and we’re working on him standing against the couch. He’s gotten better. We’re trying to teach him how to walk along the couch. This makes him very nervous but we’re seeing progress. Noah is non verbal. He babbles and says “dada”. He loves to play with toys that play music and light up. He has a few favorites for sure! As far as Noah’s club foot goes, I keep his foot/ankle stretched and he wears AFOs for support. As of right now, he’s not on any medications and hasn’t had any seizures.

Noah is a very happy little boy. He’s calm and good natured. He always has been. He only gets upset if you have food and he wants some! Or if he’s tired. He loves to eat. However, he doesn’t chew so we give him very small bites of food that needs to be chewed. We’ve never had a problem with him choking.

Noah is currently making transitions to be able to go to school in the fall. He’s going to go to a Special Needs school, here where we live.

We never imagined having a special needs or disabled child. I never thought we’d be able to handle this. I was wrong. Noah is the most amazing gift we could have ever gotten! We are so blessed and so honored to have such an amazing little boy! He brings so much joy and happiness to our family! We love him to the moon and back and we’re SO proud of him! He is our EVERYTHING! We wouldn’t change anything about our journey.

© Copyright - Mowat-Wilson Syndrome Foundation