Family Stories

Morgan's Story (GA2)

After two miscarriages and two failed in-vitro fertilizations, my husband and I were finally going to have our baby. I had begged my doctor to induce labor because I had retained a lot of water and I had developed a blood clot in my leg. It was hard to move at all. So on August 4, the day before my due date, I was admitted to the hospital and induced. The next day, after many epidurals and only dilating to six centimeters, they decided to perform a C-section. Morgan Lynnae Jones was finally here. Five minutes after birth, she had apnea, and they whisked her off to the NICU. A few hours later, my husband tried to bottle feed her because I was still recovering. She could not keep any of her food down that first day, and still had trouble the next few days. The hospital gave her Isomil and said that it was just a lactose intolerance. They also said that she cried all of the time, but they said that it could be normal.

After being in the hospital five days, we finally got to bring her home. She always spit up and cried all the time (I had ear plugs around the house). Our pediatrician said that she looked good and that it was just irritable crying syndrome. We did not know any better because Morgan was our first child.

In November, our pediatrician noticed a few things. She noticed that her eyes were not focusing yet and that Morgan's head seemed to be larger than other children her age. First she sent us to see an opthamologist. He was perplexed at what he saw, so we were sent to see a pediatric opthamologist at the University of Kentucky. This doctor told us that he had never seen anything like this before. He thought it could be Morning Glory Disk Anomaly, but he was not sure. A retina specialist also looked at her. They both were stumped. The most they could tell us was that she possibly would be legally blind. Next, we went to Cincinnati Children's Hospital to see a neurosurgeon. He looked at her CAT scan and said that things looked normal. He determined that my husband's family had large heads, so she was just taking after his family. We thought everything would be OK other than her eyesight, but we were just happy she was here.

On January 9, I fed her cereal and a bottle. About five minutes later, it all came back up. When I went to change her I noticed something orange in her diaper. I got scared. I called the doctor's office, and they told me to go to the ER. We got to the ER at 11 am. They determined that she had the flu and that we were going to stay overnight. It was 5 pm when she finally got fluids, and she had not kept anything down that day. That night and the next day, she seemed be okay. She could keep down Pedialyte, but no formula so we were going to stay another night. On that night the IV box beeped for 20 minutes. After not having fluids for that short of time, she started to have a seizure. Our pediatrician decided there had to be more wrong, so she sent us by helicopter to Cincinnati Children's Hospital.

The hospital did every test imaginable: X-rays, blood tests, EEG, MRI, eye exam, retina exam, and eye ultrasound. We had talked to so many doctors, we could not remember anyone's name. After two days of tests, they discovered that she had a small frontal lobe with fluid and blood around it, and that her retina was somewhat detached with blood on it. They immediately brought the Child Abuse Team. They asked us all kinds of questions and we were as open and honest we could be since we had nothing to hide.

The next day they told us that they were going to keep us there for four more days until they had some answers. During these days, Morgan had two more seizures because they had taken her off the IV fluids and she still was not keeping anything down. A geneticist came in and said that he was going to test for a metabolic disorder, but he did not think she would have it. All we could do was pray, and ask everyone we knew to pray for an answer. These were the worst days of our life. They wanted us to admit to something, but we didn't know what had happened either!

Finally on January 18, they let us go home, but without any answers. Two days later they called us and said they may have found something. It may be a fatty acid oxidation defect and this is probably what caused my problems during pregnancy, her constant crying and her so called "injuries." We were glad that we finally might have an answer.

We went back up to Cincinnati that next week. They took a skin biopsy to send to Dr. Roe. At this time, they put her on CarnitorĀ® and a seizure medication. After six weeks we got the results back. Morgan had GA2 or MADD. At this time they put her on Riboflavin (she will only take it with caffeine free Dr. Pepper in a syringe), Polycose powder and a high carbo diet.

Morgan is now seven and a half months old and all of her doctors are amazed at her progress. Her eye doctor says that some of the blood on her retina has disappeared and she is seeing a lot better. She can now follow objects, pick up objects and can respond to our facial expressions. The neurologist could not believe how much better her muscle development was. She can now roll over, hold her head up and sit up with some support. She can also stand with support, and they told us that she may never walk. They never expected her to do so well, but we did because we knew that we have a God who can do anything! We are thankful to God for giving us our precious little girl.

Chad and April Jones
Grayson, KY