| Mandi Jo Willis |
| Our little girl was born December 12, 1998, she was a healthy 6 lb 7 3/4 oz baby. We were both released from the hospital 2 days later. She seemed to be fine, but after a couple days of being home, she was not holding anything down. We thought maybe it was the formula she was on. She started to get lethargic and we could not wake her up. I called her doctor and spoke with a nurse. She told me to see how she did overnite and if there was no improvement, to call her back. Well of course I didn't wait, I called my husband at work and told him to meet me at the emergency room. Once we arrived, they rushed her back and ran some tests, which came back with nothing. By this time we were all getting very scared and frustrated. The ER doctor wanted to admit her, but my husband and I refused, we demanded them to send Mandi to another hospital who could diagnose her. From there they shipped her to Soo Canada, once there they ran a number of test's on her. The doctor came to talk to us and said they found the problem, but they did not have the equipment to treat her. By this time Mandi's ammonia level was over 700. From there they air lifted her to the Univerisity of Michigan in Ann Arbor. My husband and I were not allowed to ride in the airplane with our baby who ws already in a deep coma. We went home, packed a bag and drove 350 miles to meet our angel. Upon arrival the team of doctors came to talk to us and said Mandi's ammonia level was over 1000 and her diagnosis was ASA. They then said we had two options; either hemodialysis, which she probably would not survive because she was too little and weak, or they could give her an experiemental drug. We talked it over and decided to go with the drug. Thank God we did. Our baby was so sick and by now everyone was so exhausted. Mandi Jo was in a coma for 10 days. Our angel came back to us Christmas day of 1998. She woke up and I remember the nurse telling me Mandi was tired and not to wake her up. I said no way we haven't seen her awake in 10 days. We picked her up and held her for hours. Mandi Jo was released a couple days later. We were all so happy and thanked all the doctors who helped her. Mandi is now 6 years old. She has seizures occasionally, but they are kept under control by Phenobarbitol, Klonipon and Lamictal. She is developmentally delayed. Mandy does not yet walk, take or eat any solids. Her liver is slightly enlarged, but even through everything she is the happiest little girl you could ever meet. She tries so hard to do everything. |
| Mandi's information as of November 2004 |
| Contact person: Edward & Wendy Willis E-mail: [email protected] Birthday: December 11, 1998 Age at Diagnosis: 6 days old Other diagnoses: Seizures Siblings: 7, not affected Protein allowance: 14grams per day Medications: Arginine, Lamictal, Klonipon, Phenobarbitol for seizures Liver Status: Slightly Enlarged Developmental Status: Delayed |
 |
 |
| Back |
 |