The last few months have been extremely heavy and taxing for us. Since writing this, Ross and I have made the very difficult decision to stay at home and not bring Evie to Boston.
After intense and very raw discussions with Evie’s team in Crumlin (cardiologist, anaesthesiologist, intensivists) we came to the realisation of how fragile our little bird really is. The general anaesthetic alone, before any imaging or procedures are carried out, could leave her on life support in ICU or sadly worse.
Evie’s quality of life is reasonably good at the minute and we really want to preserve that for as long as we can. She has her struggles, and we do too, but mostly she is such a happy little thing, developing in her own time with her little body holding its own against the odds. Keeping her comfortable and out of hospital is really our main priority now.
This is the piece I wrote for our GoFundMe while we were still deciding whether to go ahead with Boston or not. I have crossed out some of the lines in this piece as they are no longer relevant but I still wanted to share it as a blog post.
Our GoFundMe Campaign – Fix Evie’s Broken Heart
Evie Ren (Little Bird) is our beautiful 10 month old daughter. She was born with a complex heart defect and trisomy 21 (Down syndrome). Both of these diagnoses were picked up during pregnancy. There was huge uncertainty over whether she would make it to full term, but she did and made us feel like the luckiest people in the world.
Evie has a severe set of heart defects – HRHS (hypoplastic right heart syndrome), unbalanced complete AVSD (atrioventricular septal defect) and a common AV valve (instead of two separate AV valves) with severe regurgitation. This set of heart defects coupled with Down syndrome is very uncommon. Evie also has pulmonary hypertension, which is damage to the lungs caused by increased blood flow.
Evie is under the care of the cardiac team in Crumlin. Unfortunately, after careful consideration of Evie’s heart defects, they decided Evie would not be suitable for corrective surgery. This is due to a combination of how severe her heart defects are and how effective certain surgeries would be considering Evie has Down syndrome (this is based on statistics).
The palliative care team have been involved with Evie’s care for the last few months. Evie had a hospital admission over Christmas after contracting rhinoenterovirus. We thought we were going to lose her and brought her home after 3 weeks in ICU and a few days on the ward for what we thought would be end-of-life care.
Since then, she has proved us all wrong once again. She still needs oxygen and CPAP (breathing support) at night time but she has gotten stronger and her little personality is beaming. She is the light of our lives and she has touched the hearts of so many people all over the world.
I reached out to Boston Children’s Hospital at the end of last year because my gut told me not to give up on the possibility of Evie having corrective surgery. Everything was pushed to the side when Evie got sick over Christmas, but Boston responded with their second opinion in March, and a glimmer of hope returned for our Little Bird.
Boston have suggested a staged approach, where first they would assess Evie with cardiac imaging to get a better picture of her heart. The next step would be open heart surgery to slow blood flow to Evie’s lungs and prevent further damage. After recovering, the next stage would be another open heart surgery to repair the ASD and AV valve.
We just want to do the best for our daughter and explore every avenue. Evie’s quality of life is and will always be at the forefront of everything we do for her. We see her struggling every day and if Boston could provide her with a better quality of life, then that’s the path we want to pursue.
Time is not our friend. There is a chance that Evie’s lung damage will become irreversible; in that case, it will be too late for surgery.
In order to be admitted to Boston, the full amount must be paid upfront 21 days prior. The total financial estimate for Evie’s care is $257,937 (approx. €240,000). This includes all of her cardiac assessments, evaluations, surgery and recovery costs. Not included is the cost of any other treatment from another specialty in Boston Children’s Hospital. This estimate also does not include our travel or living expenses while in Boston. This is why we have set the target amount higher than the financial estimate.
From the beginning, we said we’d never stop fighting for our miracle girl, and here we are fighting still.
I just want to say a massive thank you again to everyone who has been on this journey with us. The support and love shown to Evie always fills me with so much warmth and hope.