Hi Everyone,

 On July 8th I will be running (yes, running!!!) the Leeds 10K in support of the Children's Heart Surgery Fund along with Kate, Lottie and Charlotte and we would greatly appreciate your support.

When Alexia was 4 days old she was sent to The Sheffield Children's Hospital A&E with a raised heart rate and breathlessness.  She looked perfectly healthy and we went purely as a precaution incase she had picked up an infection.

On our arrival, they discovered that her Oxygen levels were lower than average and they rushed her to the resuscitation room where she was to stay for 10 hours.  She spent this time being prodded and poked whilst the Doctors struggled to get any blood from her tiny veins.  Fearing that she may have an infection they started her on Broad Spectrum antibiotics just in case whilst they waited for the results of blood tests.

Test after test came back negative but Alexia's Sat's were not getting better, peaking at 95% even with an oxygen mask on.

Desperate to rule all possibilities out the Doctor's told us they needed to perform a Lumbar Puncture to rule out Meningitis (despite the fact that she had no symptoms).  They then asked me and Brett to leave the room, as this procedure was too distressing for us to see.  They performed the Lumbar Puncture but it failed, meaning there was blood in the sample and the results would be inconclusive so they would need to try again tomorrow.  By this point 4-day-old Alexia was exhausted and no longer able to feed for herself so a Feeding Tube was inserted into her tiny stomach through her nose.

Having ruled out nearly everything else the Doctors said they needed to do a Heart Scan but it was Saturday and they would not do this until Monday.  Over the course of the next 2 days Alexia endured more blood tests than I've had in my life and had an Oxygen tube in her nose helping her out.

On Monday 12th December, when Alexia was 6 days old we took her for her Echocardiogram (Heart Ultrasound) and the Doctor told us that Alexia had a condition known as Transposition of the Great Arteries.  They gave us a leaflet and told us Alexia needed to go to Leeds General Infirmary as soon as possible.  They sent us back upstairs and whisked Alexia off to have a second canular put in her hand for lifesaving drugs until we could get to Leeds.

She was rushed to Intensive Care and was crowded by a specialist team of doctors desperately trying to prep her for her imminent transfer to Leeds. 

Alexia was given drugs to keep a duct in her heart open until she could have her life-saving surgery and they put her in a Special Incubator with a special oxygen supply so they could take her to Leeds.

They told us that Alexia was too poorly for us to travel with her and she needed to go with this team of specialists so we had to meet her there.

When Alexia arrived at Leeds she was scanned and taken off all the medication and oxygen as the Consultant explained to us that these interventions wouldn't help Alexia to get better.  She sat us down and explained her condition.

Transposition of the Great Arteries is a condition where the Aorta and the pulmonary artery are the wrong way round meaning that the deoxygenated blood is continuously pumped around the body.  Babies with this condition die very quickly unless they have surgery to keep a duct open so the oxygen can mix.  Alexia had complex Transposition, meaning this was not the only congenital heart defect she was born with. 

 

She also had an Atrial Septal Defect (a hole in the heart) and a patent ductus arteriosus.  These heart defects are what gave Alexia a better chance of survival as they allowed some mixing of blood.  Although they helped, she still needed surgery urgently.  After 3 weeks she would have deteriorated rapidly and died without surgery.

 

We were on the High Dependency Ward for 8 days before Alexia had her surgery.  Alexia’s surgeon Mr. Watterson came to explain the procedure beforehand.  He told us that although the operation was risky (the chances that Alexia would die during surgery were much higher than the chances of her getting TGA in the first place) her condition was fatal so we had no alternatives.

 

On 21/12/2011 when Alexia was 15 days old we took her to theatre and stayed with her while they put her to sleep.  It took 3 hours for the anesthetists to work on Alexia before she was properly ready for the switch procedure.  Once she was asleep her temperature was lowered until her heart stopped and the function of her heart taken over by a ‘heart-lung machine’. Once the heart was stopped, the surgeon switched the arteries to a normal position and also closed the ASD and PDA.  They then had to restart her heart and try to wean her off the heart-lung machine. 

 

After 9 and half hours in surgery they called to say they had finished.  The operation had been a success but she had just come off the heart-lung machine so the next 24 hours were critical.  Her heart was very swollen from all the extra work it had been doing over the past 15 days.  Alexia was still sedated and had canulars in her hands and a femoral canular in her thigh.  Her sternum was left open as complications would have meant emergency surgery and they needed to give her heart time to start working again.  She had 2 large chest drains and pacing wires to increase her heart rate, as her blood pressure was a little low.  She was on a ventilator, which was breathing for her.

 

For the next 24 hours in Intensive Care they weaned her off her sedation and she began to move her arms and legs, she pulled through the critical stage with no problems.  On the Friday morning, when we arrived to see her we could not go in as she was stable so they had decided to close her chest.  By that evening she was awake and they were weaning down her drugs and ventilation.  She was starting to take some breaths for herself.  The next morning her ICU nurse said she had remained perfectly stable overnight and they were turning off he pacing machine to see how she coped.  Her Sats were 100%.  They continued to wean down her ventilation and when we arrived at ICU in the evening to see her (which happened to be Christmas Eve) she was off the ventilator and breathing on her own! This was fantastic progress just 3 days post open heart surgery and 1 day since having her chest closed.

 

When we arrived at ICU to visit Alexia on Christmas Day morning the nurses said, “She’s not here!”  She had progressed so well since coming off her vent that she had been moved from Intensive Care to High Dependency!  When we got there Alexia was not attached to anything other than her SATs monitor and her feeding tube.  By that evening she was bottle-feeding!

 

On Boxing Day they told us she could be moved back to a private room with us where they would spot check her.  Her only medication was Calpol and a small dosage of morphine before bed.  Over the next 2 days she progressed so well, we were told we would be home within the week.  They removed her dressing and pacing wires and on Wednesday 28 December, just a week since Open Heart Surgery Alexia was discharged.

 

She continued to get better and better, regaining all the weight she had lost in hospital and was feeding exceptionally well.  Now, 11 weeks post op and thriving Alexia has just had her first follow up.

 

Her heart looks good and so far she has suffered no complications!  Complications later down the line are possible and throughout her life Alexia will be monitored by her cardiologist.

 

The switch operation that Alexia had has only been used for about 20 years so there is not a lot of certainty about complications in adulthood.  With enough research we hope that by the time Alexia reaches adulthood they will know enough to help her.

Although Alexia has had corrective surgery, her heart will never be normal and the risks of complications will always be there.

 The Children’s Heart Surgery Fund supports the LGI to provide invaluable equipment, which is vital in saving many children’s lives.    Their motto is “Our hope is to give 'each child a childhood'; our dream is to give them an adulthood”. I am trying to raise money and awareness to help them to help Alexia and many other’s like her.  They saved her life and save so many others over the course of a year.

 Please help me to support such a worthy cause.  Any donations will be so gratefully appreciated!

Thanks,

Aimee, Brett and Alexia xxx