Lexie's Story

My second child Lexie was born on 14th July 2OO9, 10 days overdue and weighing a healthy 8lb 12oz.

The pregnancy was fine - nothing abnormal on the scans apart from that she was on the large side, which I expected as her older sister weighed in at 9lb 2oz, so really everything was straight forward.

We returned home from the hospital 24 hours after the birth and as far as I knew it was the start of a new happy chapter in my life.  She gained lots of weight and was over 9lb by a week old - she was perfect!

The health visitor was thrilled and surprised, but then at 10 days old something wasn't quite right - when she cried there wasn't a lot of sound coming out …

It was my 21st birthday and when family members visited me I mentioned it to them - nobody seemed too phased by it as my other daughter Jamie-Lee was a bit under the weather and had been smothering her new baby sister quite a lot, so we all put it down to the same cough, cold & sore throat that she had.  This was on Friday.

On Sunday night she was being quite sick and I just didn't feel that this was normal, so I phoned NHS direct who ran through the standard questions and advised me to take her first thing to the doctors.

It was quite busy in the waiting room and we were still waiting about an hour after the actual appointment time to be seen and Lexie was becoming worse by this time.  Once the doctor got a look of her we were sent to the hospital.  He said he suspected a chest infection and that how she was turning blue when she cried meant she needed a chest x-ray, so I called my older brother for a lift down to the children's ward and to take Jamie-Lee with him while I got Lexie seen.  That's when the nightmare began.

Lexie was taken straight from me and examined by different doctors and nurses. They didn't know what was wrong with her but suspected septicaemia and were trying to find veins to get fluid in to her, but they couldn't access any.  They shaved patches of her hair to try some in her head and in the end they had to put a needle in to the bone in her leg and accessed her blood supply that way.

She was on oxygen and I'll never forget the sound she was making as she breathed, it was as if she was just going to stop at any given moment and any one of those breaths was going to be her last!  I got hold of her dad (we had broken up 2 months before her birth).

When the efforts to stabilise her failed we were advised that the best thing would be to put her to sleep and let a ventilator breath for her as she was becoming very tired and they didn't want her to stop breathing suddenly.  She was to be transferred to a better equipped, cardiac hospital.

Once the ambulance team arrived to collect her a few hours later we were told that they suspected the problem was actually Coarctation of the Aorta (narrowing of the major blood vessel from the heart).  This was explained to us and we were prepared for her to have surgery later that night or the following morning - if the echo confirmed the coarctation.

Later that night at the cardiac hospital she was given an echo and the coarctation was indeed confirmed, but then they also came across a Large VSD (ventricular septal defect) it was all too much to take in, but they were fantastic and everything was explained so clearly with diagrams where needed.

Lexie was to be operated on the following morning, aged just 2 weeks.  The operation was done in her side/round her back and they went in between her ribs, deflated the lung and worked in her teeny tiny ticker, removing the coarctation and fitting a band around her pulmonary artery to counteract the problems the VSD would cause.

The surgery went well; she spent 10 days in the intensive care unit before being transferred to the ward for 3 or 4 days.  They were satisfied about her heart, but she was suffering with severe reflux, so they weren't happy to discharge her home, but transferred her back to our local hospital.

She spent a further 2 weeks in the local hospital being given a potion of reflux medicines in order to get her keeping some of her feeds down.  She was fed through a tube a lot simply because she kept a little more down this way and was struggling with the bottle a bit too, but finally at 6 weeks old she was coming home, she was back on bottles and weighed less than she did at birth.

It could just be a coincidence, but she started smiling the same day she came back home!!  I was so proud of her for fighting her way through and not leaving me.  I was told all along that they couldn't say that she would be okay and also, if she was, they couldn't say how being so critical would affect her in the long term.

In December 2OO9 at 4-5 months old she was back in the local hospital with bronchitis, antibiotics and monitoring for a few days and she was discharged just in time to spend her first Christmas at home.

A few months later at a check-up she was to be put on the list for a diagnostic catheter procedure to see if the time was right for VSD closure.  I think it was about April 2O10 that she went in for the procedure - all went fine and she did great as usual. She had a check-up after the catheter not long before her 1st birthday to discuss the findings from the procedure which was all good and she was to be put on the list to come in for the VSD closure.

I was very anxious about it and a little upset that she would have another big scar, this time right down her front but knew it was necessary. With every operation there are risks and I hate the whole signing the consent forms part - giving my baby’s life to someone to be responsible for in such a serious way.

She went in for the open heart surgery in August 2O10 aged 13-14 months, an operation that was to take about 5 hours.  I was waiting around for her all day - about 9hours in total I believe.  I kept asking at the desk if they had heard anything back from theatre to be told they hadn't heard a thing.  Finally there was a message to go to the Intensive Care Unit to speak with the surgeon.  All sorts were going through my mind, and I was so relieved when he said she was fine and came off the by-pass beautifully.  It had taken so long because it was more tricky than they anticipated and they had to alter another part nearer her lung, too.

You begin to feel as if it’s just one thing after another and worry that your luck is going to run out.  She spent a few days in intensive care before being moved to the ward, she wasn't herself at all - you could tell she was in a lot of pain.  Horrible to watch as her mother and she refused to eat, which is completely out of character, so ended up being in for 2 weeks instead of just the average 7-10 days, but we got there in the end and she was discharged.

Everything was fine at her next check-up and they were pleased with the repairs.  December 2O10 on Christmas eve an ambulance was called out as she was having breathing problems, she was admitted to our local hospital and didn't come home until boxing day evening - the diagnosis was respiratory infections and pneumonia, but she recovered well.

In 2O11 a problem came with her aortic valve, it was bicuspid (BAV) and was narrowing as a result so they needed to monitor this over the months.  It was decided in September 2O11 to put her on the list for a catheter procedure to stretch it using a balloon, which was performed in October 2O11.  It went very well and she's now free from heart check-ups until summer 2O12 which is the longest she's gone in her life.

She spent her first December healthy and out of hospital and finally it seems all of this is slowly becoming something that can be put on the back burner rather than being the main focus in our lives.  Her development had to be monitored regularly for the first 18 months of her life to make sure her brain and body was working as it should - and no damage had been caused from the condition she was in when first being admitted as a small baby - which could have been prevented if something was picked up before she was born.

She was a little behind with things and occasionally liked to give us all a little worry but she's doing absolutely fine with her development now.

Her reflux became a bit more controlled with constant medication which continued for about a year of her life it still affects her now and again but only in a very minor way.

She's now 2 and half years old and doing amazingly.  One day she's going to ask me about all her scars, but I hope she can be proud of them and proud of herself, too, because I know as her mother I couldn't be any more proud.

I am so grateful for everyone in our local hospital and in the cardiac hospital for everything they have done.  If anyone had done anything differently this story might not be so positive and I'm also so grateful to my brother for having Lexie’s sister Jamie-Lee for weeks at a time - sometimes while I was away in hospitals with Lexie.

I was alone through all of this - I didn't have anyone there for me and was so young.

Nobody prepares you for something being wrong with your child.  By writing this I hope to help other parents with what they might be going through - because you’re not alone.

And I also hope that I can put all the upset behind me once and for all.

The pictures of Lexie are after her first operation, after her open heart surgery and a photo of her now.

Lexie’s mum, 2011