Premature birth: Elizabeth’s story

Today we welcome Elizabeth and her daughter Eleanor to the blog. Eleanor was born at 28 weeks and in her 5 years has faced some incredibly tough battles. Today is Eleanor’s 5th birthday so we’re sending her lots of ‘happy birthday’ wishes!

Eleanor is 5 today.  Here she is enjoying her birthday cake this year at her party this weekend.

5 years ago this was her.

Eleanor was born at 28 weeks weighing 1lb 4oz.  She was delivered early as she had stopped growing, the placenta was failing and we were both quite unwell.  We were transported inutero for delivery at a large neonatal regional centre in Sheffield.

The prognosis that first night wasn’t great.  We were given a 1 in 4 chance she’d make it through the night and as you can see she did.  This was the start of 5 and a half months touring the neonatal units of Yorkshire to get her home.

It wasn’t an easy time.  Eleanor struggled with infection after infection and permanently seemed to be taking two steps back after every leap forwards.  Her lungs were her weak point and she remained ventilated for 9 weeks in total before some steroids helped her off and onto CPAP before finally reaching the heady heights of low flow oxygen.

It wasn’t until January 2008 that I finally got to cuddle my baby.  She was too sick to be over handled and she had so many infections the staff were reluctant to let her out for cuddles that I desperately wanted.  I spent until then just sitting and watching and trying not to get in the way.

Finally on her due date Eleanor made it back to where this had all started York Hospital and we really started to get to know her.  Handle her, feed her, talk to her read to her, dress her the list goes on really.

 Eleanor, aged 99 days

Finally at the start of April 2008 we got to bring her home on oxygen.

Eleanor still had a lot of issues to contend with as she was only 5lb 11oz when she came home.  Feeding and growing and ditching the oxygen were the main things she was contending with at the time.  Then we had to get through a winter with lots of new germs.

Most people think that’s where our prem baby story ends.  Really that’s just the start.  I’m sure someone can wheel out a statistic here but whilst I’m sure the majority of Prems have no ongoing health issues we didn’t have one of those babies.

Eleanor failed her newborn hearing screening just before discharge.  It wasn’t until August 2008 that we realised that actually she did have a genuine hearing problem but couldn’t quantify it for a few years.   She was fitted with hearing aids immediately and started to receive help to engage with sound and the world.

However breathing without oxygen was her no 1 priority.  Our first winter was turbulent.  An admission a month for a chest infection or a respiratory virus.  She even managed to get herself admitted to PICU.  Eleanor was a little fighter and didn’t let any of these quite worrying episodes knock her back and kept soldiering on.  By age 2 she had quit the oxygen during the day habit.

Eleanor had her 5 minutes of fame in March 2011 as she became one of the Tommy’s (the baby charity) Champion Children award winners.  We had a day trip to London to receive her award from Lee Mead.

 Winner

Once we were satisfied that we were on a good feeding and growing programme and that the oxygen habit was successfully kicked it was time to concentrate on the hearing element.

Finally in September 2011 we reached the conclusion along with the assistance of the Yorkshire Cochlear Implant Service that Eleanor had a bilateral profound hearing loss which was suitable for cochlear implants.  She was also thankfully declared fit for surgery and had her operation on 18th October 2011.

Switch on was a month later and started a mainstream pre reception class in January 2012 ready to go into the main class in September.

We are one year on from cochlear implants and she is really starting to get to grips with her world.  No words yet but we’re starting to get sounds and noises and lots more signing it’s only a matter of time before we get there with that one.

It’s been an eventful 5 years, I can’t deny it.  It’s not the way I thought being a parent would be.  However my baby girl has defied the odds and okay she is most certainly deaf as a result of her prematurity but compared to what it could have been I’m more than happy to take that.  Who knows where we are going next I’m sure it’ll be fun.

Also just to say lightning doesn’t strike twice her younger sister was born in May 2010 at 39 weeks gestation as planned and it’s a totally different experience.

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15 million babies are born preterm around the world every year—that’s 1 in 10. More than 1 million babies die due to complications of preterm birth and many of those who survive face a lifetime of disability. Both Tommy’s and Bliss raise funds to help both babies and families who are born prematurely and require special care.    You can find more about what they do, or make a donation, by clicking the links provided. 

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3 thoughts on “Premature birth: Elizabeth’s story

  1. I had the pleasure of being Eleanor’s childminder and even though she had lots of extra surpport she has been of the most inspirational little girls I have ever had the pleasure knowing. Happy birthday sweet heart xxx

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