Shiekh Muhammad

Propionic Acidemia

Assalam o alaikum (Arabic for “May peace be upon you”). I am Zareen, mother of Shiekh Muhammad who was born on 1st October 2014 in the country of Oman. When my baby was born he was OK at first, then the night of his 3rd day of life he became unconscious but were still in hospital because of c- section. Since this was my first baby and I didn’t realize that he was unconscious…. he was quickly shifted to ventilator. His glucose level was zero. They took blood samples that shows acidosis, and his ammonia was climbing to 600. The next day my baby was shifted to Sultan Qaboos Hospital. Dr. Khalid accepted the case and the referring doctor told us that your baby may have a metabolic disease named methylmalonic or propionic acidemia. I was in shocked and continue to be as it was very difficult to accept. I never heard the disease before! My mind was just full of questions. I don’t know of any in Asia and especially the countries like India, Pakistan or Bangladesh or any countries where such children are born. My baby was diagnosed with Propionic Acidemia, but still can not imagine that my baby is not as other normal children. My baby first MRI shows that he has hypoxia cerebral atrophy. I also brought my son to Pakistan, but my baby got diarrhea and in a very bad condition, so I came back to Oman. Many tests were taken in Pakistan – culture blood test, urine test, blood gas, x ray etc. Ammonia was 100 and I couldn’t find Carnitine injection form, so oral dose was too high, which made his diarrhea worse. Anyhow it was like a nightmare. I’m so frightened to go back to Pakistan to meet my family despite the struggle that I’m doing with my baby Muhammad but he is such a nice boy. He is so brave and Alhumdulillah (Praise be to Allah (God) he is active and much better than before. The damage has been done when he was in coma for 2 weeks and he also have seizures and is on phenobarbital medicine. We will struggle, and I don’t know what will happen. Sometimes I feel fear about my baby other organs. I am thankful to my baby’s metabolic team. They really support us. We get the L carnitine from Egypt – it is cheaper, and it has not strong smell as the carnitine I use before which mostly patients use in our OAA organization. I am very happy to find OAA — to talk about Propionic Acidemia because no one is familiar, and no one can understand what it is. I get many answers. My baby is delayed child and does not walk or talk. I am optimistic for his development though I’m worried about his low muscle tone. Ahhh i will never give up. I am trying to get USA Visa because in gulf countries still job you can live but after it you are sent back – but can’t afford to go back. I don’t have any health insurance. I have to pay everything ourselves. So many challenges but still I’m hopeful. Good luck for my little champ.

Zareen
Oman
Zareenzaigham416@gmail.com