Michelle is from South Africa and has had two children with infantile osteopetrosis — a rare inherited disease where the bone marrow produces bone instead of blood, and the bones harden quickly. Her experience shows the difference that good palliative care can make to every aspect of life when raising a child with a life-limiting condition — and why it’s so important that ICPCN continues to support its development.
“My son Jessy was born in August 2014 and diagnosed at 10 months. When you get a diagnosis like that, you don’t really know what to expect. For me, it felt like there were all these people up there, and I was down here — with no hope of understanding what they were trying to tell me about my child, let alone how to manage as a young parent from a coloured township. I’d never heard of the diagnosis before. There were all these big words being thrown at me, almost without sympathy. The doctors were fascinated by the diagnosis, but they didn’t talk to me about how to manage his symptoms or whether we could try to get him a bone marrow transplant. I was told I’d better stop planning to have another child because this one wouldn’t live long.
Eventually we met with the palliative care doctor, Dr Ambler. We weren’t referred to her — she heard about my son, got in touch with me, and then came to our home. Dr Ambler is part of a service called Umduduzi, which is a Zulu word that translates to ‘comforter’. She explained that we should have been referred earlier. She told us about her role and her team of nurses, who could ensure we had enough medication, help us apply for a social grant, provide clothing and toys, and sometimes transport to and from hospital for families who couldn’t afford it. Even after a child passes away, they provide counselling and group bereavement therapy for parents. They support you through your grief journey until you feel strong enough to part ways.
Jessy had constant pain and wouldn’t eat or sleep. When Dr Ambler started treating his pain, he was less agitated — and that meant we could finally get some rest. She was so gentle in her approach, explaining the condition, breaking things down for me, and telling me what to expect. She talked through what we could do if certain treatments didn’t work, and whether we could increase his morphine slightly to make him more comfortable. I could see the difference in him. And I could feel the difference in myself. I felt more assured about what I was doing.
Jessy was three years old when he passed away in November 2017. We had met Dr Ambler in August that year — and yet, in just those few months, we built such a strong relationship. It didn’t feel like she was just a doctor. She didn’t wear the hat of ‘I’m the doctor, you’re the patient’. She was always willing to listen. Palliative care is a partnership with families. Individual care is what you need.
In 2020, she was the first doctor I told when I had another baby — a girl named Gia. When Gia was four months old, I could see she wasn’t reaching her milestones. I went to the hospital and asked them to do the tests. I saw the same signs as with Jessy — the almond-shaped eyes, the shape of her face. It was so hard to keep moving forward. I’d gone through this twice in five years. It was grief on top of grief. But this time, Dr Ambler was on board from the very beginning — from Gia’s diagnosis to the last day of her life.
I think it’s vital that ICPCN helps get the message out about early referral to palliative care. Many professionals think palliative care starts at the end of life, but it can start as soon as you find out your child will be born with a condition. By the time a child is nearing the end of life, parents have already been through so much. They don’t want to add another doctor to the team. But if palliative care is introduced early, it helps parents transition to the knowledge that their child is going to die. And it brings peace.”
Michelle Norman is from Umduduzi, Hospice Care for Children, in South Africa. https://www.umduduzi.co.za/
Early identification of a problem that needs doctors appointment and action is very important.This prepares the guardian to accept and know wayforward for his child and what steps to take to alleviate the pain and symptoms management, inclusive of psychological, emotional,social and spiritual for the patient , family and caregivers. It really important as in the case of Jessy and Gai’s diagnosis. As in this case the parent had gone into such situations twice and early referral will make the guardian understand and make prompt decision and help her have quality of life.