When your child is born with disabilities or complex medical needs, there are areas of your life and theirs where you will have to learn to fight. You will have to learn to speak up, sometimes to shout, to ensure your child’s needs are being met. One of those environments is with medical care. For those of us who have children born with extra needs, we get thrust into this complex world often from day one.
It’s a hard lesson for some of us to learn. Some parents are born that way. Parents of disabled and medically complex children are sometimes referred to as dragon parents. And for some dragon parents, those protective scales, sharp talons, and firey breath were there before their child was born. They will immediately question doctors and nurses, demand answers and advocate for their child. But for others, like me, confrontation is not something that comes naturally. And confrontation of authority figures like doctors, who are supposed to know everything and have all the answers, is even more daunting.
When my daughter, Eva, was born she had a whole series of tests. I was informed of them, they were explained to me, but I never questioned their rightness or wrongness, they were just what was being asked for by the doctors, and they must know what was right.
We were in the hospital for six weeks when my daughter was born and during that time, I never felt like I had the power or the knowledge, or the strength to question what was happening. And the reality was that I didn’t. It was a vulnerable time for me and for her, and unlike those born to be dragon-mothers, I took a while to grow my claws.
The first time I started to realise that I was the only person who was my daughter’s true ally, and I had to step up, was when we were in hospital for an appointment with the ears, nose and throat doctors. They were going to put a small camera down my daughter’s nose to check her airways. It was an important test, because my daughter’s breathing had always been a concern.
Eva cried and squirmed as they put the the tube down her nose. She already had an NG tube down one nostril, and I can only imagine what having a second tube forced into her nose felt like. As she cried, the picture on the tv from the camera became less and less visible. Her crying was creating secretions in her nose and throat, making it impossible to see what they wanted to. They stopped and let me calm her and tried again, with similar results.
I was waiting for one of the nurses or the doctor to say, “that’s enough”. But they didn’t. They had their eye on the end result, and Eva’s discomfort was noted but not their first priority. It was mine. I held her down while she cried, until I cried too. I took longer than I care to remember to say “enough is enough” that day. I think back to that appointment often and wish I had said something sooner. Stood up for my daughter as her ally.
But I learnt my lesson.
After that we had multiple occasions where my position as her ally would be tested. We spent weeks in hospital when Eva got sick and I got very good at telling nurses to let her sleep when they came around to do heel pricks and get blood samples. I realised I had the control and could ask them to come back when she was awake. They had a schedule, but Eva’s sleep was more important than a heel prick in that moment.
I learnt to ask more questions and never to assume that every procedure was absolutely necessary. I learnt to use my voice and speak up and challenge the authority of doctors in terms of what was best for Eva, not what they thought was best in terms of medicine.
This is not to say I thought I knew more than the doctors. But I knew my daughter, and when I had everything explained to me, I was the one who could weigh it all up and decide what was best.
But like I say, it didn’t happen overnight. So if you’re in a position where you are having to be an ally to your child in a medical framework, perhaps your child is normally healthy but you’ve found yourself in the PICU with a chest infection, or perhaps your child has been born with a disability or other complex needs, how do you become that dragon parent, when you are so used to saying yes.
1- Be informed. Research. I know some parents (and all doctors) will say Google is not your friend, and sometimes that’s very true, but read up from reputable sites. Learn as much as you can about your child’s condition, because if their condition is rare sometimes you might know more about it than your doctor. Don’t assume everything you read is true, but read widely and carefully.
2- Use this knowledge to arm yourself with questions for your doctors. Ask them! Write a list, bring notes to your appointments and take more notes there. Don’t be afraid to ask silly questions. Get things explained. If they use medical jargon, which they will, ask them to translate it.
3- Know your options. Talk about different options and their costs and benefits. Don’t assume the first answer they give you is always the right one. There are often (not always) a number of ways to address an issue. Find out about each option and decide from there.
4- Get a second opinion. If you are having doubts, or even just need to hear something from two different doctors, get a second opinion. I have lost count of the times I have heard of parents of medically complex children refusing to accept the diagnosis or prognosis from one doctor and discovering that this instinct was correct when another doctor said something completely different. This isn’t about losing trust in the medical profession, it’s about recognising that doctors are human, and a second pair of eyes and ears, or a third, can’t hurt.
5- Find a doctor you trust and build a relationship with them. This can be tough when you have a medically complex child, because you might have a shopping list of specialists who you see, but try and find that one paediatrician or general specialist who you trust and can talk to.
6- Trust your gut. If something doesn’t feel right or seem right with your child, trust your instinct. Again, this doesn’t mean ignoring health professionals, this just means that you spend 24 hours a day with your child, you know them better than anyone, so that knowledge is important and vital in treating your child, don’t let your voice and your gut be ignored.
7- Sometimes you will have to hold your child down when they are crying. Testing isn’t always comfortable. There will be things that your child will need to go through for their own sake, and sometimes that means you will have to hold back tears yourself as you hold your child down for a test or a procedure. But by the same token, know when enough is enough and speak up.
As parents, we all discover that we are the advocates for our children. In most typical circumstances we don’t have to test out our advocacy skills for quite some time, they can remain dormant until we have hit our stride as a parent and feel more confident in our role as their advocate. As a parent to a child with disability or complex medical needs we need to learn those skills and step up quicker, with bigger challenges early on. So step 8 would be to be kind to yourself. This journey isn’t easy, for you, or for your child, so don’t blame yourself too harshly for taking a while to find your advocacy voice.
Tessa Prebble is the writer/producer/creator behind The One in a Million Baby podcast, which focuses on families living with special and medically fragile kids. Her own daughter, Eva, died from complications of CHARGE Syndrome at 10 months old. She is the inspiration and motivation behind the podcast and Tessa’s writing around disability and advocacy.
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