By Stacey Martin
Indie Evelina was born on 2 September 2013, at 29 weeks, weighing 2lb 5oz. An unexpected early arrival, she was critically ill.
After my waters broke in Hereford County Hospital, we were transferred to Gloucester Royal Hospital, where Indie was delivered by emergency caesarean section.
After four hours of initial stabilisation, Indie was transferred to the RNICU (Regional Neonatal Intensive Care Unit) St. Michaels Hospital in Bristol for life saving Nitric Oxide treatment.
Indie was on life support for 15 days, including ventilation, oscillation, nitric oxide, paralysis drugs and a variety of sliding scale drugs which helped her to mature before she finally could breathe for herself. She continued on CPAP, Bubble CPAP, High Flow and Low Flow until she was fully back in 'air' and breathing unaided.
She was transferred back to Gloucester for a few days, before heading home to Hereford County Hospital.
Indie defied all the odds against her, she overcame a brain haemorrhage, a heart murmur and the other challenges a premature baby faces, apart from being super tiny, she was healthy.
Bringing Indie home
The 17 October 2013, was the happiest day of our lives, Indie was able to come home.
Weighing in at a tiny 4lbs, but perfect in every way.
Coming home was incredibly special, not only because we had a healthy, beautiful daughter but we have two other children, whose life had also been turned upside down by Indie's sudden arrival. It meant our life could resume some normality, I would be able to spend time with all my children, rather than split between SCBU and home.
The following weeks were full of doctor’s appointments, hospital visits, health visitor appointments and so on, but everything went well. Indie was gaining weight, albeit slowly. She was getting there.
The day everything changed
On the 22nd November 2013, our lives were to change forever.
Our perfect little girl passed away at 3:50am. Her death is a complete mystery. There is no cause of death. A full inquest returned a verdict of unascertained - SIDS effectively.
As a mum, this makes me feel cheated.
Cheated because we did all the 'hard work'. The minutes, hours, days, weeks sat by the incubator praying she would make it through, Indie proving what stern stuff she was made of by making the 'perfect' recovery, for her to stolen away from us when she was just settling into our family.
Personally, I've had every range of emotion for a human to possibly feel.
Anger, desperation, sadness, helplessness, sorrow, devastation to name but a few, but as the days turned into weeks since Indie passed, the overwhelming feeling I had was one of gratitude. Grateful that I got those precious 11 weeks with my daughter.
We wanted to give something back after all the support we had
Without the support of doctors and nurses at all three hospitals that we resided in, we would not have had those 11 weeks and I felt compelled to do something, anything to be able to pay back what they gave us. Nothing will ever be enough for these unsung saints in the hospital SCBU/NICU departments, but if we could just do something to help. After a few days of thinking, Indie's Gift was born.
Our aim is to provide ClothPacks and NeoPacks to the SCBU/NICU in order to help ease a tiny portion of the stress facing parents of children who start life in SCBU.
Our packs for parents of premature babies
Our ClothPacks will contain:
- 1 Vest
- 1 Sleepsuit/babygro
- 1 Hat
- 1 Set of mittens
- 1 Blanket
These items are NOT provided for babies on the NHS. These items are sometimes available in SCBUs from donations they receive from other parents; our aim is to have a pack available for every baby that enters the SCBU.
We also aim to provide a NeoPack for parents of SCBU babies.
- Tooth brush
- Hot chocolate
- Cereal bar
- Notepad and pen
- Information and support sheets
These items may seem small or even trivial, but when you’re thrown into a situation that you have no control over, the last thing on your mind is to sort these little essential items out. To be able to have a wash and brush your teeth is simply the best feeling - from someone who has personally been in the situation, it really is!
This is Indie's Gift - a gift to all parents who are going through this journey.
If there is only one thing you take away from reading my story and Lukas’s, please take away 'hope'.
We've kept the eye mask he wore, to remind us of everything he made it through.
This unique Preterm Surveillance Clinic – funded by Tommy's as part of our research in St Thomas' Hospital, London, has won an NHS Innovation Challenge Prize, for its success in reducing the number of premature births in South East London.
Tommy’s prematurity research centre in London is based at St Thomas’ Hospital, where the charity first began. Opened in 1995, it is the first Maternal and Fetal Research Unit in the UK.