Our baby girl Eve Florence Doherty was born 9th May 2019. Despite a very normal pregnancy and no indication of health concerns during scans Eve had a very traumatic start to life.
Eve has a one in a million genetic condition affecting her lungs and heart. She has been dependent on oxygen since birth and we are unsure of her outcomes. This go fund me supports us in her ongoing medical costs, hospital stays, extended leave from work. Eve and her mum Georgie often play and make art together at home. You can find some BREATHE FOR EVE prints in this ETSY STORE . One print will cover the cost of one oxygen tank for Eve.
We had no idea the first two months of our lives as parents would be spent at the Royal Children’s Hospital in NICU and after being discharged, the journey wouldn’t end there, with ongoing fortnightly specialist appointments, additional hospital admissions and a rocky road to finding how best to help our baby.
At birth, Eve was unable to breathe on her own. She had respiratory failure and turned blue.
Within the first 72 hours of life Eve had ECG's, Brain scans, CT scans, X-Rays, chest drains, nitric oxide, a myriad of injections and drugs, morphine, adrenaline, IV's and a number of tubes draining her lungs and feeding her. We were unsure whether these interventions would keep her alive, she was immediately ventilated with a tube down her throat and supported by an oscillator which did the breathing for her at 500 (tiny, shallow) breaths per minute.
Eve fought so hard to be here! She is such a beautiful girl and it's clear to see she is a fighter.
Thankfully Eve responded to this initial treatment and after two weeks on the oscillator doctors began weening down some of the drugs and started to reduce the heavy reliance on some of the breathing machines. She spent the following months in hospital on low flow oxygen whilst still undergoing tests and observation to reveal the cause of her condition.
Eve has never clinically fit one specific diagnosis, making it very difficult for her specialist team to attribute a ‘name’ to her reliance on oxygen.
Eve has been diagnosed with Interstitial Lung Disease (chILD) and severe Pulmonary Hypertension (PHA). chILD in newborns is extremely rare, diagnosed 3 cases per million. It is a name given to a collection of possible diseases that effect the lung lining and the bodies absorption and transportation of oxygen (it is a very vague diagnosis). For Eve this is thought to be caused by a genetic mutation to the TBX4 gene. Eve’s TBX4 gene sequence is the only reported sequence worldwide. Research in this this area of genetics is only 12 months old, with a handful of cases documented. There are some devastating outcomes we’ve read from this research ranging from infants not surviving, requiring heart/lung transplant during childhood, reliance on oxygen for life and shortened life expectancy. There are also examples of infants surviving this and developing normally with mild cases managed by medication. We have had many hard conversations with Eve’s specialists, they can not predict which way she will go.
There is no known cure for Eve’s condition. There is also no comparable case like her, no ‘proven step by step’ treatment and no way of knowing the severity, the rate of progress or outcome. She is currently receiving low flow oxygen of 1-2L per minute and trailing medications. We go back to the Royal Children's Hospital every fortnight for appointments and every 4-6 weeks for a week at a time for IV medication.
It is a battle we never thought we would be faced with, but we have had great comfort in worshipping our way through it with gratitude and prayer and an expectant heart of good outcomes. Eve is currently stable. We hold our breath at every appointment, scan, test for any indication that she is improving. It is unlikely to see a significant improvement in her stats in a short period of time and hard to know if the medications are working immediately. The most certainty we have to cling to is knowing that this recovery is ‘all up to Eve’ as her consultant put it, and her body growing stronger to defeat this disease.
Day to day Eve has quite chaotic breathing patterns and works incredibly hard to feed – it is the work rate of running a marathon everyday. We can’t believe how happy and giggly she is despite all of her energy spent focusing on breathing. It is bizarre to know she is so unwell when you look at her. She makes us laugh daily and is quite the demanding, cuddly boss baby! We completely love being her mum and dad.
We thankyou for reading this far about her journey! It has been an incredible comfort to know that you are thinking of her and wishing her well. Your messages mean the world to us.
We created this go fund me to help support us with the ongoing costs with keeping Eve well. Our goal is to cover 2 years worth of oxygen support for Eve. At 2 years old Eve’s lungs will have had the greatest chance at growing healthy lung tissue.
Eve currently needs low flow oxygen to survive and this will continue indefinitely for now. She must always be attached to an oxygen concentrator at home or a portable concentrator or tank when we go for walks in the pram. She also is monitored overnight by an oximetry machine and has daily medication to try to treat her PHA and lung inflammation.
Eve is becoming quite the little artist at home and has created some painted paper with Georgie. These have been edited into some BREATHE FOR EVE downloadable prints. You can find these in the BREATHE FOR EVE Etsy Shop . All sales from these prints are intended to be put towards Eve’s treatment.
Some break down of how we will allocate her funds look like this:
o $5,500 will buy a portable oxygen concentrator and batteries. This means we can leave the house!
o $28 will buy Eve one portable oxygen tank lasting 7 hours
o $20 will buy two nights stay at the Ronald McDonald House
o $30 will buy one foot probe for oximetry machine (these last 2-3 uses)
o $48 will buy oximetry machine hire for one month
o $50 will buy face tapes for one month
o $200 will buy Eve’s medications for one month
o Petrol and parking for hospital visits
o New pram to hold her oxygen tank/concentrator
o Additional time off work for Shaun to attend appointments, extended maternity leave for Georgie
Since having our baby and spending time in NICU we have experienced many miracles of healing. These have been beyond the understanding of Doctors. It's our jobs as her parents to believe that Eve's life will continue to be a miracle and full health will be restored. Eve wasn’t expected to survive her first night. We know she is meant to be here, to grow up and share her testimony of how she overcomes this. She is already making a significant contribution to this world, to genetic research and as an inspiration to other families with sick children.
We thankyou in advance for any contribution to our BREATHE FOR EVE 2 year oxygen goal. If anything, please let this be a reminder to appreciate your easy breaths.
Eve’s Mum and Dad,
Georgie and Shaun
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