Walking With Giants Foundation
Supporting Individuals and Families Affected By Microcephalic Primordial Dwarfism

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Matthew

Matthew

picture of matthew 01

It all started when I was 20 weeks along in my second pregnancy. I had a uneventful first pregnancy, a healthy baby girl, Jessica. But, when we went into the ultrasound for my second one to find out what we were having, the doctor noticed that he wasn't measuring up to what we thought he was. He was at this point 2 to 3 weeks behind what most average fetuses are. We just thought that he was on the smaller side. So, we came back for a second ultrasound which would be in 3D. This was new technology at the time for us, so we could actually see what our baby would look like before he was even born. How amazing. This was at 32 weeks. He had really fallen behind in the growth chart by this time, he was 5 to 6 weeks behind. So, we started to get worried. We were sent to a neonatologist at 35 weeks, and started doing stress tests twice a week to make sure he was all right. Bryan and I were really scared by this point, but the doctors assured us that he was fine, so far. The Neonatologist wanted to induce the pregnancy at 37 weeks as long as there weren't any problems. So, we waited.

Matthew was born on February 7, 2004. He was due February 28 (on a leap year). He was born 4 lbs 12 oz., 16 inches long. He was healthy according to the doctors, so we took this precious little man home. We struggled trying to figure out why he was so small. Doctors said to feed him formula right away, so that he could 'grow' faster and 'catch up' to other average babies. Well after time of feeding him formula, it seemed he couldn't keep anything down. My husband and I would stay up all night trying to calm him down. We didn't know if he was hungry or in pain from eating. We were very frustrated because we couldn't take care of him. At 3 months, he ended up in the hospital because he had some weird sounding cough. He spent the night in an Oxygen tent because the doctor thought he may have asthma. He went home the next day with a nebulizer and medicine to treat asthma. Although we weren't sure that was what he was suffering from.

His first years were very tough for us. We spent countless days at different specialists in Toledo, Ohio. We had appointments with an endocrinologist, geneticist, pulmonologist and a nutritionist. It was constant. We learned from the pulmonologist that he had GERD and tracheo/pharyngealmalacia. This would help us realize why he would go through constant upper respiratory infections/exacerbations, and why he was having a hard time eating. He would get upset and vomit after each feeding. It was hard for him to gain any weight. He was put on Prevacid to help the GERD. We were able to find a nutritional supplement that he would drink. He would continue to eat better, but had to eat baby food until he was 5 years old.

The geneticist ruled out a lot of possible syndromes at the time. This caused more frustration because we weren't getting the answers we needed. We realized that Matthew needed one of us with him all the time. He was just barely beginning to walk around age 2, and talking was not happening yet. He would grunt a lot and get upset. We couldn't communicate with our child. It was the hardest thing for us.

We focused a lot of energy on getting Matthew in ISD programs for physical therapy, speech therapy and occupational therapy. He was at home with Bryan for a whole year and a half and was able to start walking, talking and learning, but he was behind. He was able to attend the Early Childhood Program at the elementary school. He went to school 3 times a week where he could receive all of his therapies. He did very well in the classroom setting. He was potty trained right after he started preschool at age 4.

Over the years, we have taken Matthew to get MRI's, xrays, bone density scans, countless labs for genetic testing. At almost 7 years old, we have found that he has osteoporosis of the spine. We are working with Dr. Richard Pauli of Wisconsin to pinpoint a diagnosis for Matthew. Right now he fits into the PD, not otherwise specified category. It has been a long journey to get to this point, and we have met a lot of great families along the way. The Connerty's along with the Walking With Giants Foundation have been very helpful by offering their support to us. We have had many questions along the way, and they have been there for us. I hope that we can pass on any help to new families.

Matthew does well in the social aspect of school. He is in first grade and has a lot of friends. He struggles with daily learning and reading. He is still utilizing special services at school because we feel that he needs assistance with daily activities at school. They can also sit one-on-one with him to help him focus. He gets tired very easily at school, so he doesn't play much outside at recess. He, up until this year, missed a lot of school due to upper respiratory illnesses, but he is getting stronger every day. I think with the continued support and compassion from John and Sue Connerty and the WWG foundation, we can grow stronger as well.

Heather and Bryan - Matthew's Parents (USA)
January 2011

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