I have been a stay-at-home mother for three years now, to two beautiful children, Indiana, 2.5 years, and Darcy, 11 months.
My partner Matt is a hard-working tradie and prior to our children, I was working as a primary school teacher.
Our little boy, Darcy, is defying all odds, living with a rare, overall undiagnosed condition. He has severely complex health issues that are affecting and limiting his everyday life. And we need your help.
This is our story.
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In January 2017, the three of us were away on holidays for the weekend.
I was seven weeks pregnant with our second child, when I was taken to hospital in the middle of the night in a critical state. When we arrived, an ultrasound was carried out and my partner, Matt, and I were told there was no heartbeat and that I was miscarrying.
I stayed in overnight for monitoring and the next day I requested a second ultrasound as I was feeling completely ‘normal’, and there to everyone’s surprise was a perfectly normal, healthy heartbeat. Several doctors came in to examine, and stated they had never seen anything like it; they were speechless.
One word – miracle.
This is when we knew, right from the beginning, that our baby was someone special, that he was going to be on this earth for a reason.
Top Comments
Have all Trisomy conditions been ruled out? And other rare conditions such as Cri du chat syndrome?
First, I want to say Jacinta, you are very impressive, and you are doing amazingly.
Can Mamamia please pass on my email address connected to this comment. If she wants to, Jacinta is welcome to contact me if she needs a mum to chat to.
(upfront apologies for any typos in this as this Mac has auto-correct)
Although I cannot identify with Darcy's condition, I wanted to reach out to an isolated, exhausted family. Many sentences in this article I was able today 'mmm' or 'yes' familiarly, and nod my head. It comes from being institutionalised/ medicalised as a parent. I really hope by publishing this article, you find the answers you need.
No one else with ever understand what you and your husband are going though. Not even those immediately involved. With that in mind, I hope by sharing details of our family, and a few little bits of what helped us, you can find some familiarity and feel a bit less alone.
Our first (and only for now) child a boy, was born 14 weeks premature.
He too had a dramatic birth, many neonatologists in the room who rushed him away to intubate him and provide respiratory support (and the rest). He spent the first 8.5 months of his life in two hospitals - first in NICU then the Childrens'. I moved in when he was at the Children's. It meant I was away from home & my fiancé all week. We switched on Friday nights. I lived and breathed hospital around the clock. I wasn't able to care for myself. I didn't eat right. I hardly slept. I saw usually 8-10 ten doctors / therapists every day. That doesn't include the many conversions I had with nurses. You soldier on and through it, determined, all because you have to. One day at a time.
Our son tried almost every respiratory, feeding machine and every drug you can imagine. Even Viagra (for blood reassure conditions within his heart). A number of times due to his condition, we felt and / or doctors felt he mightn't make it home. He did eventually.
Like Darcy, our son was also diagnosed with CLD, needed constant oxygen support and home oxygen. I remember how it became normal to have an oxygen concentrator, a humidifier, many tubes, a monitor, and a feeding pump attached to our baby at home. My fiancé crafted leather straps that hung off a bassinet on wheels, with clips on the end, and we'd clip the machinery on and he'd be wheeled around the house, tubes and cords trailing. He made the same leather clip attachments for the pram. I have to recommend an IKEA trolley - they are manna form heaven when you have a highly medicalised in home situation. We kept everything on it. Bags of syringes, hand sanitiser, pH test strips, tapes, tube lube, thermometer etc.
When we went out, taking a sufficient number of oxygen tanks - and people's looks and enquirers down the street. I remember when he was allowed to have breaks off oxygen support during the day - enormous freedom - for all of us! It had taken an age to get him in and out of the car. I actually preferred to take the train - I could just pack up the pram, wheel him up the street and away we went.
Like Darcy, our son has been NG tube-fed since birth, though he struggles still to take food or drink orally. I must congratulate this family on their progress, despite the diagnosis the doctors gave on feeding! Well done. That is amazing. After more than one year of trying everything to encourage our son to feed orally, it's finally been identified he needs tests to check his ability to swallow. I was so relieved to find out it wasn't us, that there were options to look into I cried.
He too had developmental delays owing to lengthy hospitalisation. In mobility (he can now crawl but head control was slow coming initially, then eventually rolling. he cannot sit up independently but is trying).
We have had physiological involvement, and specialised equipment and exercises. He is also experiencing a language delay. Thankfully he is a naturally happy, social, expressive and easygoing boy. That part has been wonderful. We enjoy his personality very much. I know he has a lot he wants to say!
We have worked in with a state program until the NDIS rolls out in our area. We still have had many specialists, medications, test, appointments in and outside the home. While most professionals have been wonderful, at times I have had to push or trust my 'mummy's gut' about what's wrong and really speak up for him. The local GP is great but many of these issues are things he hasn't dealt with in a patient before. Sometimes we are educating him.
Another thing in common - like this mother, my other half was working part time and developing his small business from home. I was home for 18 months all up and finally returned to work 3 days a week. There has been some financial relief, and also it's just been good to use my brain and interact in a non medicalised way.
I would suggest this family reaches out the their state's carer's association as ours has provided a home helper to do a few shifts, also connect us too they local movie club that meets once a month, plus offered 2-3 respite carer shifts.
This kind of experience is very isolating, very exhausting, but there is nothing you wouldn't do, read, hear or try to help your child, or the family. No stone unturned. A lot of it is instinct, and we all know medical professionals, do not know everything, even the most wonderful ones. We know our children best. During our early days at home (12 months ago) and at the rime it felt our version of "normal" (we were finally free from hospital remember?!) now I am stunned by what we coped with, and in awe of Darcy's family and what you are doing.
Hi Claire, thank you SO much for getting in touch. Feel free to contact through determined Darcy Facebook page