Ella's Story

Ella was born 3 weeks early one November evening after a relatively short and very straightforward labour.  It never crossed either of our minds that anything was, or could be wrong. She struggled to breastfeed after her birth, and I was given help overnight to cup feed her by a student midwife. Looking back, during that night I must have seen every member of staff that was on duty. They came in by ‘accident’, to fetch equipment or because I had pressed the call bell. Despite their differing reasons for being in the room, they all came and looked at Ella. This didn’t strike me as odd at the time, but with hindsight, I now understand why.

The next day, we received the news that Ella was displaying several features of a baby with Down’s Syndrome. Shock and disbelief set in and a million and one questions immediately started racing through our heads. This wasn’t at all what we had expected. Instead of taking our beautiful girl home, we were having to readjust our hopes and dreams and face up to a future of uncertainty.

Looking back at that night, I did have my suspicions.  It makes me smile now, as I remember checking her palm creases - one of the features of Down's Syndrome is a singular palmar crease. Ella has normal palmar creases but she does have the wide set, almond shaped eyes and small nose that characterise facial features of people with Down's Syndrome.

Once we were told, we had little time to react to the news as Ella dropped her blood sugar, temperature and oxygen saturations and was taken to Neonatal Intensive Care Unit (NICU). It was thought that she had a heart defect, which up to 50% of babies born with Down’s Syndrome do.


A heart scan the next morning showed she did have a hole in the wall of her heart. We were told this was manageable with medication but that she would need surgery when she was 4-6 months old.

Ella spent the first two weeks of her life in hospital. She lost 15% of her birth weight and we struggled to establish feeding. She was unable to breastfeed and we took the decision to start bottle feeding formula and expressed milk, which she initially took well to and we were allowed to take her home when she was 13 days old.

At home, feeding times became increasingly stressful and erratic as she began to take less and less, most probably due to the stress on her heart which was tiring her. We ended up having her admitted to hospital at 7 weeks old to have a nasogastric tube inserted to feed her with. Within 3 days she was already putting on weight and this has continued ever since.

Once the NG tube was in, the stress on us, created by her poor feeding was immediately relieved.  We gave her what she could manage from the bottle (normally 20-30mls) and the rest went down the tube (60ml in total every 3 hrs).  Once babies under 12 weeks have an NG inserted there is a big emphasis on keeping their suckle reflex (ability to suck).  This is why the bottle is offered at the beginning of each feed, to keep up the practice. After 12 weeks sucking becomes a learned skill - the reflex disappears - as the baby has acquired the ability due to doing it from birth.

However, after a few days Ella developed a heightened gag reflex and wouldn't tolerate anything in her mouth. This meant she became completely NG dependent and gave us further worries for the future as to how we would wean her.  We worked hard with the speech and language therapist to overcome her heightened gag reflex.  In the end, it was Ella who cured herself, once she found her fingers and thumbs and was constantly putting them in her mouth. 

We began to wean her at 17 weeks - a bit early but I was conscious that she needed the oral stimulation and to develop her oral motor skills. It took her a couple of months to understand properly what to do with the spoon, but she got there in the end.  We also started introducing cup feeding to teach Ella to drink from an open cup, as she was unable to suck from a bottle.  

Once she had her heart surgery at 5.5 months old, she then had a PEG tube inserted (long term alternative to NG tube) which we are able to give her fluids down.  At 9 months old she was taking all her milk orally from a cup and we were only using the PEG to give her water and meds.   She now really enjoys her food, mastered finger feeding at 13 months and we had the gastrostomy removed on 23rd February 2012.


On May 12th 2011 at Alder Hey Hospital, Ella underwent open heart surgery to repair her VSD (Ventricular Septal Defect - hole between the wall of the ventricles). Her op had been cancelled twice before, so it was third time lucky.  

I don't think I can explain how I felt, it's not something that is easily put into words. For the most part, survival mode kicked in and I pretty much ran on autopilot for the week she was in hospital. 

Even being a nurse and working in a clincial environment, nothing prepares you for seeing your own child, so small and vulnerable,ventilated and hooked up to noisy machines.  I remember wanting to run away but knowing I could never do that to her. 

I could manage about ten minutes at a time sitting and watching her.  I knew she needed time to get better, but waiting is the hardest thing to do.  I just wanted to scoop her up and cuddle her but I couldn't even do that.  She was on ITU for two days (instead of just one) after a minor hitch that set her back 24hrs.  Considering she had major surgery, she came through it very well. 

After her 2 days on ITU she was transferred to the ward and was discharged on day 6 post surgery.  She has a 3-4 inch scar down her chest and a residual tricuspid valve leak which is being monitored.  She has more energy now and has most definitely recovered much quicker than her mummy and daddy!

I can’t imagine for one second my life without Ella and for whatever reason she came to be mine, I will be forever grateful. She has taught us so much in these few months since we had her. We have learnt a lot about ourselves as individuals and as a couple and we are a much stronger unit since she arrived. It has also made us appreciate what wonderful friends and family we have.

You may also want to read 'A bit about us' 
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