When you first meet seven-year-old Malaika Azeem from Bradford, she appears to be a healthy little girl. But at only a few weeks old, Malaika was diagnosed with life-limiting Congenital Heart Disease, a condition that causes increased heart rate, shortness of breath, chest pain and mobility problems. Malaika is in need of round the clock care that often leaves mum Sanam struggling to cope.
Malaika also suffers from frequent cyanosis, which causes poor oxygenation of the blood, otherwise known as ‘blue episodes’, for which she requires immediate hospitalisation. For mum Sanam, the past six years have been a constant battle to find support for the family.
“The last 12 months have been really stressful for us all. In January last year, Malaika underwent open-heart surgery and doctors were unsure as to whether she’d pull through. After the operation, I cared for Malaika myself, changing her tracheotomy at home, as well as managing her physiotherapy. Since then, she has had several severe blue episodes and endured repeated hospital stays.
“I’m lucky to have the support of my parents and sister, who live close by, but there are very few people I would trust with Malaika’s care. Although I’ve previously tried to access different services in Bradford, there are few who really understand Malaika’s condition. Because she looks normal, people don’t understand.”
The challenge of caring for Malaika 24 hours a day, seven days a week is made more difficult as Sanam must juggle Malaika’s needs with those of her three sisters. Nimrah 13, Romesa 10, and Saira 3. For them, family life revolves around Malaika’s medical care, meaning that weekend activities and time out together are almost impossible.
Sanam explains further.
“Planning outings is a huge struggle. In the past, when we’ve been out and about, Malaika has fallen or become ill, so when I’m looking at places to go I have to consider where is suitable for her, and what might happen if she is ill away from home.
“I often feel guilty not being able to spend time with the other children. They sometimes get upset at the amount of attention I give Malaika, but when she falls ill, they understand why she needs me so much. My eldest, Nimrah, acts as a mother, sister and friend. She will help to wash and change Malaika and is a huge support to me. I’ve always tried to be honest with them all about the reality of Malaika’s condition and we take each day as it comes.”
Sanam self-referred Malaika to Martin House in the summer of 2015, and was overjoyed when the family were invited to a special tour prior to their first stay: After their first stay at Martin House in November last year, the Bradford family are hopeful that, with the right support, life can become a little more manageable.
“Malaika loved her first visit to the hospice. When we got there she didn’t know where to look first, and was so excited saying, “look at this, look at that”. She didn’t want to come home at all! Before our first proper stay in November, Malaika had been very ill and I was barely sleeping. The stay came at just the right time for both of us.”
“The time we spent at Martin House was an extraordinary experience. It was so good to get away from everything. Going to the hospice gives me the chance to talk to other parents and realise I’m not alone – their children might have different needs but we are all in the same boat. I don’t need sympathy; it’s so wonderful to be able to speak to people who understand.”
“When I talk to people about the hospice, they assume it’s all about end of life care. But Martin House do everything. Malaika loves to sing, and when she last stayed, she made a CD of her singing nursery rhymes and other songs. When I listened to it, I was in tears! It’s building up these memories that’s so special, all the little things that we do together that mean so much.”