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Diagnosis: a parent’s experience

Parents of children with developmental disabilities discuss their experience of assessment and diagnosis.
CAROLINE: When he was born, he didn’t feed, and that raised some alarm bells. And because there was a single umbilical artery in utero, they said for their records they would just take a blood test, and that was just for research purposes. And we took him home, and then a week later, we got a phone call from the hospital saying, “blood test results are back. Can you come into the hospital tomorrow to discuss them?” And I said, “well, can you give me any indication?” And they just said, “well, it’s bad news.” And that was it. And then we had to wait 24 hours to go into the hospital.
And then when we went into the hospital, they said it’s this very rare condition. Told us what it was, gave it a name. But didn’t really have any information. Had no idea of support groups of which, there are some. And there was no genetic counsellor there, and the appointment for the geneticist was six weeks away. So we were just sent home with this baby. And every question that we had, they didn’t really know the answer to, but it was bad news. And it was all very bad news. And I think that really didn’t help.
BRENDA: At the first hospital, they never told me the reason why the baby wasn’t sitting at six months. Why the baby wasn’t meeting her milestones. They only told me that I wasn’t taking good care of her. So at that, I was very disappointed. Because I never knew that the baby had that kind of disability. Without coming here, I wouldn’t have known that the baby has got cerebral palsy.
CAROLINE: Then I was saying, “well, will he sit up?” “Probably not.” “Will he speak?” “No.” And it was, “he will do nothing, this child.” And it was totally devastating. And there was no support. You know, we weren’t put in touch with anybody, and it was just that my sister was Googling and she found UNIQUE, the rare chromosome support group. She phoned them. They phoned us. They had a leaflet. You know, it was really scary times, but you just need information and a little bit of support and feel like you’re not on your own. And unfortunately, none of those really were the case.
BRENDA: I never knew that the baby would have the chances of starting to sit, or stand, or walk after some years. But then, after the doctor encouraged me that physio would be the best thing, that the baby may start walking or sitting, at least I was happy.
LAMBERT: Like as I said, that in addition to having very good communication skills, they gave us the information leaflets about the condition, and also discussed about the potential strategies. And then following that, they made a prompt referral to the super special service at Great Ormond Street.
CAROLINE: It was only a few months later when I saw a paediatrician, and he just said, “look, just enjoy him as a baby. Enjoy every day. Try not to think too far ahead because you’re just imagining this awful future for your child.” And that was really helpful. But I think we could have had a bit more positivity. I think it’s as simple as maybe having a parent advocate, so you’re in touch with someone who’s been through the process and can kind of talk you through it so you’re not feeling isolated.

In this step, listen to parents of children with developmental disabilities, as they discuss their experience of assessment and diagnosis.

Tatiane, Caroline, Lamiya, Brenda, Galida and Lambert provide examples from their personal experiences and reflect on what was done well by the healthcare professionals and what could have been improved.

Remember, you can respond in the comments section below if you want to share your own perspectives, thoughts or reactions. In the next step we will hear from healthcare professionals, as they discuss good diagnostic practice.

This article is from the free online

Integrated Healthcare for Children with Developmental Disabilities

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