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.
I went on to have a very normal pregnancy. I was doing everything I could to ensure my baby would be as healthy as possible, as I did with my first pregnancy.
Over the next few months various tests were undertaken to ensure our baby was developing and completely healthy after the miscarriage scare. I was having fortnightly and weekly scans throughout my pregnancy and in my third trimester, concerns were raised by my obstetrician that our baby could possibly have some heart issues.
We went on for further cardiac specialist testing with all tests coming back normal. The ultrasound also appeared normal and there were no other concerns.
On the September 4, 2017, our beautiful baby boy Darcy was born at 35 weeks after an extremely traumatic birth. A beautiful picture that will never leave my mind was when Darcy was born, I looked down and all I saw was the back of our tiny little baby with a head full of thick, black, curly hair (identical to his daddy’s); I knew instantly we had been blessed with a baby boy.
Within seconds Darcy was rushed over to the nurses' table with Matt right by his side. Moments later he was then raced out the door with a handful of nurses and doctors. I immediately knew something was wrong.
After 14 long hours, I was finally able to see and touch my baby in the special care unit for the first time. Darcy was in an incubator completely covered in tubes and machines. I could see he was struggling to breathe and needed a lot of support.
I was informed that Darcy has severe respiratory issues, and many babies with this condition don’t make it past birth; no-one knew what our outcome is going to be or if Darcy was going to be able to pull through.
As the hours, days and weeks went by Darcy was still in hospital and we were right by his side. Over time more concerns arose regarding Darcy’s health and it was becoming obvious his little body was struggling. Darcy had been diagnosed with: Laryngomalacia, Obstructive Airways, Obstructive Sleep Apnoea, Chronic Lung Disease, Cleft Palate, Hypotonia (weak muscles, otherwise known as the floppy baby syndrome), permanent hearing loss in one ear, various severe cardiac conditions, feeding issues and was placed on home oxygen full time.
Most of these issues are linked in with the severity of his breathing. We were absolutely devastated.
In the earlier months we were informed by doctors that due to Darcy’s difficulty breathing and his weak airways there’s a good chance he won’t be able to take any food orally for a few years and he will need immense amounts of therapy.
After ongoing therapy at the hospital and plenty of practice at home with Mummy, Darcy now takes milk orally along with solids and is supported with a feeding tube.
Darcy is now 11 months old and has spent more than 7 months of his life in hospital. Darcy has had many Emergency and ICU admissions (16 Emergency admissions in 5 months this year alone), hospital stays and various operations to increase his ability to breathe.
Just recently, in March, we had an 8-week long ICU admission due to Bronchiolitis that quickly turned into Sepsis. Darcy became so unwell that within a matter of hours his body went into respiratory arrest; he was revived twice, heavily medicated and then placed on life support for a total of four weeks. After two failed attempts to get Darcy off life support, palliative care became closely involved. We moved into the hospital for eight weeks, and Matt and I were told to prepare for the worst as all the evidence was showing us that Darcy’s body did not have the capacity to make it through.
My motherly intuition kicked in and despite all the evidence showing otherwise, I knew our Darcy was not ready to give up. He just needed some more time to strengthen his body and heal from this infection that was trying to take his life. Our little fighter!
As Darcy grows and gets older, his health issues are worsening. His daily struggle to breathe is putting more strain on his organs and his chest tugs with every breath. If he gets a slight flu, his body can only manage for a short period of time until his oxygen numbers become dangerously low and we are straight back into ICU. Specialists are currently keeping a close watch on Darcy’s several heart conditions, which are worsening as his body grows. Open heart surgery may be needed if deterioration continues.
Having complex health issues brings many challenges for baby Darcy and our family. I have automatically turned into a 24-hour, full time carer for Darcy. Due to his Obstructive Sleep Apnoea and weak airways, Darcy spends more time awake then asleep. During the night when he is in a deep sleep, he will wake regularly, shaking and screaming as his body just had an episode where it's stopped breathing. This is frightening for all of us, which then makes it extremely difficult for Darcy to fall back to sleep; he is awake on average four hours straight every single night.
As severe on-going sleep deprivation is not healthy for anyone, he has been trialled on different medications to help relax his body for a short period during the night - all having the reverse affect on him and keeping him awake for up to 15 hours straight.
We are told that his O.S.A is something that he will eventually grow out of. However in the meantime, every day is a constant struggle for myself, trying to care for and entertain an active toddler and a medically fragile, overtired baby whilst my partner is out working full time and trying manage his own small trade business from home in between.
Darcy has hours of ongoing allied health appointments each week for monitoring and different therapies to strengthen his body; he cannot be left alone due to often spontaneously turning blue, and constantly pulling out his tubes.
He has been on oxygen 24 hours a day since he was a newborn, however he has recently passed his oxygen study to have the oxygen turned off when he is well and awake during the daytime only. This is a huge step in the right direction that Darcy is breathing room air sometimes.
Yet we cannot take Darcy to many public places as his immune system is too weak and he picks up some form of illness instantly. It has put a lot of strain on all areas of our lives. This has impacted our two-year-old daughter immensely, especially when Darcy’s admitted to hospital and our family is divided in two; two at the hospital, two at home.
We are very lucky to have such a good support network, my partner Matt and my Mum especially who have been beyond amazing every day.
As we are quite a private family, it has been difficult to speak up and share our journey. We are sharing our baby's story in light and in endless hope that someone, somewhere knows of someone that has similar health issues, or for some form of cure, treatment, diagnosis.
Surely someone out there knows something!!?? Brisbane specialists have informed us, that Darcy is so rare and we will most likely not receive a diagnosis for some time, but never say never right?
Technology and science are constantly changing and advancing every single day. We need this missing piece!
Darcy’s range of health conditions have recently been classed as life-limiting, leaving us devastated and heartbroken at what possibly lies ahead for our young family of four.
Without a diagnosis for Darcy, his short and long term future development is all unknown. Will he ever be able to crawl, walk, talk, etc? Our Determined Darcy is slowly reaching his developmental milestones despite his rough start to life; he is almost holding is head up on his own, rolling and trying to get up onto all fours.
Any form of movement, fine or gross motor is extremely exhausting for his body with his work of breathing increasing within minutes of exercise before requiring a rest.
We are going through an extremely isolating experience and taking each day as it comes. It breaks my heart watching our baby struggle to breathe - something that we all do so naturally without even thinking. Life can be so cruel.
Looking at Darcy, minus the tubes, you wouldn’t suspect there is so much happening on the inside of his body. Throughout all of this, he is the most affectionate, happy, loving, stubborn and most placid child who loves company, the outdoors, music and playing with his big sister.
Throughout this unimaginable situation, it has taught us to make the most out of every day together and to focus on the positive. Both of our children are given a high quality of care, shown happiness and loved immensely, providing them with best quality of life whether it be for a few short months or the next 50 years.
“Once you choose hope, anything is possible”.
Please visit ‘Determined Darcy’ on Facebook, a page we have set up on to share Darcy’s journey and to spread awareness.
I would like to thank Lady Cilento Children’s Hospital, Hummingbird House, Australian Hearing and the Allied Health Services we are involved with weekly for all of their ongoing support.
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