Brandon, Age 11
MMA, Cbl C
My name is Kimberly, mother of Brandon Harris, age 11. I had a normal pregnancy until I went in for my first sonogram. There they found that I had several fibroid tumors that had caused the placenta to attach itself very low in the uterus. I was diagnosed with placenta previa. I was now a “high risk” pregnancy. I went for my normal routine appointments but continued to have several sonograms throughout the pregnancy just to make sure all was well. I continued the pregnancy to full-term without any complications.
Once Brandon was born (2 weeks late) he had to be re-hospitalized twice for billirubin. When he was born, his APGAR scores were on target. He weighed 7lbs 6 oz. and was 21 inches long. We spent the night at the hospital. Throughout the night, I tried to begin breast-feeding but Brandon did not seem at all interested in eating. We also tried bottle-feeding but the same results occurred. I had a lactation specialist come in and try to help me since this was my first child. She did help me and reassured me that this was “normal” and I was just feeling stressed and he would latch on soon. Brandon was taken the next morning for his circumcision with no complications. We were sent home once he voided. He still was not eating like I thought he should. The hospital signed me up for the lactation specialist to do some home nursing visits. Once we were home, within 24 hours, Brandon was very lethargic and looked yellow. We called the pediatrician and she wanted to see him immediately. She had lab tests done right there in her office and Brandon’s billirubin levels were very high. We were admitted to St. Joseph’s Hospital immediately and treated for jaundice. We were there a few days and discharged. Within 24 hours, Brandon was re-admitted for a spike in his billirubin levels. This "reoccurrence" sparked a red flag at St. Joseph's Hospital here in Baltimore because they had never had a case like this happen before. Since Brandon was not getting any better and we were not getting any answers; we asked to be sent to John's Hopkins Hospital for a complete battery of testing at the urging of a cousin who is a pharmacist. We were greeted very graciously and hastily. As soon as we got at the doors, whole teams of doctors were waiting for us. We felt like royalty at that moment. We arrived at 8:30 in the morning. At 1:30 in the afternoon, we had a partial diagnosis. Brandon was given several blood tests, head measurements, skin observations, hair swirl observations, an MRI, and CT Scans. I am sure there were many other tests completed at that time. The results concluded that he had some type of genetic disorder and was given further genetic testing. He had a fibroblast skin test taken and it was sent to a “guru” doctor in Canada. Within two weeks of his birth, was had the Cobalamin C Defect diagnosis (MMA). The doctors took Chuck and I in a conference room and began to explain this very rare disorder. We were dumbfounded and scared all at the same time. During our month-long stay at John’s Hopkins Hospital NICU and PICU, Brandon did experience some seizure activity. He was given some seizure medication for a short time. The doctors concluded that the seizures were a result of Brandon’s system being brought back to normal blood levels. The doctors had told us that Brandon would not have lived out that day had we not brought him there. He was a very sick little boy. We have been very fortunate that he has not had any re-occurrences since that time in the hospital. During out stay at the hospital, Brandon had to be fed through an “N-G” tube. The doctors had told us that he might need to have a stomach tube surgically placed in the future if he fails to eat. This had never had to happen. Thank goodness AGAIN! We had started on infant formula (through the consult of the nutritionist) until the doctors and MY HUSBAND urged me to being pumping my breast milk. This, we believe, has been one of the contributing factors that Brandon has done so well all of these years.
Brandon’s medical regimen consists of B-12 shots 2x week, daily folic acid, Betaine (4 scoops 2x day), Carnitor, and WALNUT OIL. There is no specific evidence but Walnut Oil is said to help with the retinas and the eyes. We had nothing to lose and would try anything if it meant that Brandon would not lose his eyesight. Brandon has had no further deterioration of the retinas in several years!
We continue with periodic visits to his genetic doctor, Dr. Hamosh (about every 4-6 months), pediatric ophthalmologist, Dr. Mary Louis Collins (every 6 months), and Dr. Alan Lake (pediatrician). Dr. Collins studied under Dr. Irene Maumenee who is world renowned for her work in pediatric ophthalmology studies.
Brandon loves to eat now! At times, I don’t think there is enough food in the house to keep up with him. He loves to eat Wise Onion Rings, which is great because they have NO PROTEIN. I let him eat bags and bags. Dr. Hamosh always said that children with this disorder would love eating salty things. Brandon has proven this to be correct. He loves Doritos and potato chips. We calculate his protein intake EVERYDAY. He is able to eat about 40 grams of protein a day. We used to try to measure caloric intake but never reach his daily goal. I must say that I gave up trying to reach it because he continued to grow and thrive. He eats a lot of different kinds of soups (chicken noodle being the favorite) and Chef Boy R D mini meals. He loves to eat out especially at the “all-you-can-eat” buffets. He loves Chinese food (beef-n-broccoli, won-ton soup, and pork fried rice). Lo-Mein noodles are a big hit too. Brandon is very in tune with his protein levels. If he gets too much one day, his body tells him to “cut down” the next day. He also is not very hungry that day either. It is almost magical!
Brandon is a great singer and thanks to his Dad, he has been able to participate in the church choir and Sunday school programs for several years now. Chuck is the choir music director at the church. Brandon has also begun learning to play the piano just like his Dad. Brandon has been taking voice lessons as well. He has just a miraculous talent for music.
I would like to conclude Brandon’s story with a simple thought…
When Brandon was born it was THE BEST day of my life! When we were dealt with this challenging hand, I felt that Brandon was given to us for a very important reason. We would rise to the occasion and put forth our best foot. I believe that he was put on this earth to one-day help others like him. I feel he will, and already is, do great things for others. Brandon is a very kind and compassionate person who loves to help in anyway he can. I am very confident that with the continued help and support of our families and friends, Brandon will continue to be a success story!
Kimberly & Charles
From the Winter 2007 OAA Newsletter