A mother’s story

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Story by Falak Zeb

When I was 6 months pregnant, I got a call from a midwife who told me my baby might be a carrier of Methylmalonic Acidemia (MMA) which is a very rare condition. No mother wants to hear this, I was in shock and very upset. Over the next three months I was monitored by the hospital and had many different types of tests and scans. I tried to stay positive because my pregnancy had gone fairly well up until that point and I was hoping that the doctors had got it wrong, I was in denial. I tried to carry on with my life as close to normal as possible.

I remember waking up in the ward after my caesarean and asking if my baby had MMA. When I was told he was I questioned what the future would hold. My daughter was born with the same condition and died when she was just five days old and so I questioned whether Daniyal would live or die.

I met Daniyal for the first time in the special care baby unit and saw everything that was beautiful about him. Over the coming days they tried to take blood from him but couldn’t find a vein. They shaved his head but still could not find a vein, I hated them doing this to my baby. I felt completely helpless very alone. When I finally brought my baby home I felt so relieved.

Caring for a baby with complex needs and expressing milk at the same time was very challenging. I had to express breast milk to measure how much Daniyal was drinking, too much would have made him poorly. MMA means he has a very weak immune system, he must take medication daily and has a strictly controlled diet. This takes very careful planning and is exhausting. 

Daniyal has also been diagnosed with a severe learning difficulty, Autism. His language skills are exceptionally delayed. When Daniyal was 4 he said his first word, Ma Ma. I felt so good inside that my baby said those words. I cried for days, because I was so happy. 

As a mother you have to carry on with life, taking every day as it comes. I have great friends who have supported me with Daniyal’s condition. I have also made two friends with members of the medical team who have been very supportive to me when I was finding it hard to deal with Daniyal’s condition. The Metabolic nurse and dietitian lift me up and encourage and support my family.

Some people can be very cruel and judgemental of this invisible disability. I feel like I have to fight for everything but I do this for Daniyal. He is a happy child, he makes me happy and this helps me stay positive. Being a mother in these circumstances is the hardest job in world, the last eight years has been a rollercoaster of ups and downs, but I will never give up or give in. 

 

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