Heather Leigh Pope

2002 - We’re just a normal family, myself Pearl, my husband Glynn and our son, Nathaniel, who was 7 years old at the time.  I was exactly 23 weeks pregnant when I went into labour (I knew this because I’d had IVF treatment and therefore knew precisely when my baby had been conceived).  The hospital staff did everything possible to stop labour from progressing, but without success. We were told they were unlikely to resuscitate the baby once born, as this was “not a viable baby” but we begged them to do everything they could.  We were bombarded with countless facts and figures. They said that even if the baby did survive it would be blind, deaf, brain damaged and have severe mental and physical disabilities.  I just couldn’t believe this was happening.

 

At 11.01 that night, 18 July 2002, little Heather Leigh was born weighing 1lb 4oz (585 grams).                              

 

 

We both sobbed our hearts out.  It was half an hour before they even told us we’d had a little girl and that they had managed to ventilate her. She wasn’t expected to live through the night and I just lay awake, waiting for them to come and tell me my little girl had died.  Nothing could’ve prepared me for seeing my tiny baby – I knew she’d be small, but I didn’t realise how terribly thin she would be.  Her skin was bright red and transparent, she was badly bruised from the delivery and she was just lying there, wrapped in bubble wrap with tubes and wires everywhere.

 

The following day she was transferred to St Mary’s Hospital in Manchester.  There we were told the grim reality of a baby born at 23 weeks.  It was explained that she had approximately a 10% chance of survival and that a baby born at this gestation is only just on the borderline of a baby being able to survive.  I remember walking around the outside of the hospital – I just couldn’t cope with this, I collapsed in a heap on the floor and cried my heart out.

 

When she was just two days old, we were taken to see her consultant and given the devastating news that she wasn’t going to make it through the next 24 hours.  She had dangerously low blood pressure and they had done all they could to try and bring it up.  They explained that her organs would fail and she would die.  I desperately tried to talk through the tears, asking if I would be able to hold her if they decided to turn off her ventilator – if my little girl was going to die, I wanted her in my arms, not all alone in an incubator. 

 

Miraculously, Heather pulled through those crucial 24 hours and amazed the doctors on the unit.  I knew then that she was a fighter and I willed her to live.  I couldn’t fall apart now, I couldn’t give up on her when she was fighting so hard.

 

When Heather was 19 days old they allowed me to hold her.  It was a very emotional scene and impossible to describe in words.

 

 

It was proving very difficult to get Heather off the ventilator and after 2 months she was given a trial run breathing on her own.  She only lasted 2 hours and she was re-ventilated.  The next time she was off for 26 hours, but I watched in horror as she suffered a collapse.  All the statistics on her monitor shot down to zero and she turned a ghostly grey.  The doctor was tossing her around like a rag doll trying to get her to breathe. Time stood still. I was dragged away screaming and had to wait outside. I was hysterical, just waiting for them to tell me she’d gone.  It felt like an eternity before they came to tell me they’d resuscitated her and put her back on the ventilator.  I really thought I’d lost her.  Time just stood still and I couldn’t stop the tears.

 

The question of using steroids to wean Heather off ventilation came up soon after and we were given all the information regarding possible risks, i.e. cerebral palsy.  It was a difficult decision to make, although thankfully we didn’t have to.  Heather amazed everyone again and came off the ventilator by herself a few days later.  I was so glad to see the back of that machine!!

 

Like most extremely premature babies, Heather’s eyes had to be examined for Retinopathy of Prematurity (ROP) – a condition which, if left untreated, causes the retina to detach and can lead to blindness.  Heather was deemed to be at risk and needed an operation to correct the problem.  I was assured that this was a routine procedure – but it didn’t stop me pacing the corridor, imagination working overtime, and coming up with several horrific scenarios!  It took Heather 3 days to recover from her ordeal, during which time she was back on the ventilator.   I spent every moment by her incubator in tears.

 

After this minor setback (according to them!!) Heather went from strength to strength.  She began bottle feeding, putting on weight and most importantly of all – breathing!!!

 

 

 

When she was 13 weeks old she was transferred back to Queens Park Hospital, Blackburn.  That was a remarkable step forward – one step closer to coming home.

 

She suffered more setbacks once back in Blackburn, back in Intensive Care for a couple of weeks – and yes, I cried the whole time!

 

Then came the words you only dream about – ‘Going Home’.  Extensive plans were put into action, as Heather was coming home on oxygen, but that didn’t matter, she was actually coming home.

 

A couple of days later, I was introduced to the parents of a baby who had just been born at 23 weeks.  They had the same terrified look in their eyes that we’d had.  It broke my heart to see their little girl lying there, tubes everywhere, wrapped in bubblewrap – just like Heather had been.  I knew what a long hard road they were facing and I just wanted to give them hope.  They marveled at how big Heather was and of course they had lots of questions.  When we left hospital a few days later, I gave them a ‘guardian angel’ that had been given to Heather when she was born.  I hoped it would watch over her too. 

 

Heather was 127 days old when we finally took her home, on oxygen.  I expected to feel terrified, but I can honestly say that from the moment I walked through our front door, all fears just vanished.  She was all mine now.

 

 

The following night was really special.  Nathaniel was in bed, Glynn was out (finally wetting the baby’s head!) and it was just me and Heather.  For the first time in 4 ˝ months, mother and baby were completely alone.  I will never forget that feeling.

 

 

Heather remained on oxygen for six months.  We had lots of support from the Community Neonatal Team and our Health Visitor – both of whom worked together to give us the best advice possible.  Our transition from hospital to home was extremely smooth and it was due to the dedication of the staff, from St Mary’s Hospital and Queens Park Hospital, that enabled me to feel completely at ease with Heather and able to cope with anything.                              

 

2006 - Heather is now 3 and a half years old.  She has no medical problems and has never been re-admitted to hospital.   Her development is slightly delayed, but she is catching up fast and there is no obvious difference between Heather and her friends at pre-school.  She is involved with BLISS and Tommys (premature baby charities) helping to raise awareness and more recently has been campaigning against a proposed ban on resuscitating babies born under 24 weeks.  If this goes ahead, babies like Heather will not receive treatment and will be left to die.  I’m fully aware of the statistics, and I am not in favour of life at all costs at 23 weeks – but each baby should be treated individually.

 

On the whole, we have been extremely lucky.  We feel truly blessed to have Heather (although I sometimes have to remind myself of this when she’s throwing a tantrum in the supermarket!).  I know not all premature babies make it, nothing is guaranteed, and my heart goes out to all those parents who weren’t so fortunate.

 

 

 

 

Pearl Pope

 

 

Dedicated to Shauna Louise Dace

9 August 2002 – 22 September 2002

“A little girl who touched many hearts, she won’t be forgotten”