Hi, my name is Quinn (aka The Mighty Quinn). I am 20 months old. I was born 15 weeks early via emergency c-section. My mummy wasn’t in labour, but I desperately wanted to meet everyone and in my excitement the doctors think I may have kicked my umbilical cord out of my mummy’s tummy. I was blue when the doctors got me out and had to be given some breaths; my oxygen levels were at 35% (they should have been between 90-95% from birth). The doctors told my mummy & daddy I had a brain injury that is caused by a lack of oxygen to the brain and I had bleeds on the brain and a cyst and a brightness on my brain so not a good start to my life really.
I was also born without a gag reflex and therefore have an unsafe swallow. I have GORD (aka the mother of all reflux) so I have to be linked up to a feed 13 hours a day, the tube goes into my nose and down into my small intestine. It can be uncomfortable, so I tend to pull it out a lot which means a trip to A&E for an x-ray to make sure its back in my intestine and not my tummy as when I was fed into my tummy, I was at high risk of getting pneumonia / chest infections.
I also have chronic lung disease and because of an infection I ended up in intensive care for a couple of weeks in May, that wasn’t fun! I need a ventilator and oxygen at night to help me when I’m sleeping. I have low tone in my arms and torso and it’s really hard for me to push up my arms when on my tummy or sit by myself, crawl or stand up. I’m inching forward though, and my Mummy & Daddy said that’s brilliant.
Over to you mummy…
I didn’t have any morning sickness and although felt tired all was going to plan. Then wk 23 I had a bleed and spent the wkend in hospital, I had a week off work and then back the week after, I felt fine again, phew! Week 25 my waters broke on the Wednesday morning but when examined my waters hadn’t broke there was a tear in the amniotic sac, fortunately there was still enough fluid protecting our baby (we didn’t know we were having a girl), the doctors gave me steroid injections to protect the baby’s lungs and I was sent home on Saturday still losing fluid, which was desperately worrying, and told to return for another scan on Monday. On Sunday night, our baby was so active and so I began to relax. It wasn’t until I went to the loo that I noticed something that wasn’t quite right, it took me a few seconds to realise it was the umbilical cord. We rushed straight to hospital and within 45 mins I had been put under general anaesthetic and our little Mighty Quinn was born on 12.3.17 at 22.27 weighing 1lb 9oz. The first week was a daze, the following weeks and months were followed by happiness, shock, denial, joy, devastation, worry, desperation and the fear of the unknown.
Quinn had an mri around her due date 22.6.17, this showed a shadow, cyst and bleeds on the brain as well as low amounts of white matter. We were told this was a result of being so premature and also the lack of oxygen to the brain once the umbilical cord had prolapsed. This type of brain injury is known as HIE and is often associated with cerebral palsy (CP), the neurologist has said CP is likely, but a formal diagnosis won’t happen until Quinn’s older. When the neurologist assessed Quinn, she told us not to expect much of her “babies can do 2 things when they’re born: breathe & feed by themselves, Quinn can’t do either”. Being told this was devastating, like our whole world had come falling down. Having a baby is supposed to be the best time; this was the complete opposite. We spent the next 9 months in hospital by Quinn’s bedside, researching everything we could, looking into available therapies, reading books and studies on how the brain can heal itself (known as neuroplasticity). This was a whole new world to us and it is a total minefield, with little to no direction or advice from Quinn’s healthcare professionals, we knew we had to do it alone and try to find the best possible help we could for our Quinn. She fought so hard for those 9 months in hospital and it’s our duty as her parents to give her the best.
We came across many alternative therapies and continue to do so, unfortunately none are funded by the NHS, so it wasn’t until we were discharged from hospital that we could really get started. Hyperbaric Oxygen Therapy (www.HBOT.com) has been amazing, it was as if a light had been turned on in Quinn’s brain. She is so much more alert now and her cognition continues to improve lots. We have been so lucky that we now have a chamber at home kindly sponsored by a local company, we use it Monday – Friday for an hour for 8 weeks, have a break and start again, we’ll continue to do this for years to come. Other alternative therapies we continue to do are CFT, smell therapy, QRI laser therapy and BodyTalk (all of which we do at www.neurorehabtherapy.co.uk), we also do Movement Lesson (www.movementlesson.com) which is a type of movement therapy helping Quinn to be more aware of her body and initiating movements that you would expect a typical 20 month year old to do, and we start orofacial myofunctional therapy (myofunctionaltherapy.co.uk) to help increase Quinn’s muscle tone in her mouth and hopefully help her to swallow one day. Quinn also does traditional therapies, physiotherapy once a week and conductive education twice a week, as well as a visually impaired one to one sensory class, plus the ‘normal stuff’ – what can I say Quinn is a busy little lady.
We are also looking to take Quinn to Panama for stem cell therapy.
Quinn is our little warrior; so determined, resilient and always happy and smiling, incredible after everything she’s been through. She continues to improve, progress is very slow, but progress is progress. We’ve spent over £10,000 already, with help from family and friends, doing all these therapies and we need to continue to do them especially whilst Quinn is so young. The brain is most plastic in the first 3 years of life, so we need to make the most of this time. We are planning to start some intensive therapies (3-4 hours a day for 3 weeks) in the new year and continue throughout the year. We have looked into therapies in the States but due to Quinn’s current situation a long flight is out of the question for now. We’re hoping and praying that through these traditional and alternative therapies Quinn will continue to improve and catch up to her peers and eventually develop her suck / swallow and ultimately have a happy healthy life.
We’re going to take part in a number of events to raise money for all these therapies, first planned are the Yorkshire 3 Peaks, half marathons, 24-hour danceathon, a marathon & skydive. We would be eternally grateful if you could help us achieve this by donating anything you can. Quinn is our little miracle and we want her to continue to defy to odds like she has so far.
Thank you so much for your support. We have discovered so much through endless research and feel passionate about sharing this with others so please share this post for awareness and in the hope that it will reach other parents going through a similar situation and knowing that there are therapies out there that can help their kids. We are more than happy to chat with anyone and discuss our experiences so far.