~Our Story~

Jayden Barry Alexander arrived at 3.50pm on 3/4/98 at Goulburn Valley Base Hospital.  At 7 pounds 5 ounces he was perfect.  He fed straight away, a natural.  I'd had a good pregnancy with the only problem of a low lying placenta showing at my 18 week ultrasound.  Another ultrasound at 30 weeks confirmed the placenta had moved up and I could go into natural labour.  We had no reason to believe we would have anything but a healthy baby.  But at day 2 our world came crashing in.

The resident doctor thought Jayden was dehydrated and I should be monitored next feed.  He refused to feed, it had been over 5 hours so he had to be hungry.  It was like he wanted it he just didn't want to suck to get it.  In a matter of minutes Jayden's breathing was rapid and his tummy was being sucked up under his ribs with every breath.  When we pointed this out he was taken from me and put in a humidicrib in Special Care Nursery and the Paediatrician called.  Firstly he thought he had a chest infection.  How does a 2 day old baby get a chest infection?  Soon realised it was cardiac.

The NETS team were called to fly him to Melbourne's Royal Children's Hospital but it took another 3 hours for Jayden to stabilise enough for him to fly.  At 8pm 5/4/98 Jayden and I flew out with dad to follow in the car, 2 and a half hours drive.  My mum was in Melbourne for a day at the footy so she was there to meet us.  After a wait at ICU doors we met Dr. Andrew Davis, Jayden's Cardiologist.  He explained Jayden had Hypoplastic Left Heart Syndrome.  He told us our 3 options:

1/ Heart Transplant:  There are not enough newborn donor hearts so this is not really an option.

2/Series of operations known as the Norwood and Fontan. and lastly.

3/ Do nothing and he will die.

There was only one option for us...Do the surgeries.

The next few days dragged by until 8/4/98 we said goodbye for Jayden's first surgery.  About 8 hours past before we got the call to say it had gone well and he was in ICU and we could see him.  He'd had a ventilator and tubes before surgery so he looked the same other than the big gauze over his tiny chest.  His chest remained open for 2 days before closure.

Jayden's first surgery 8/4/98

With a few ups and downs we didn't leave ICU for 2 and a half weeks.  What a relief!  But our relief was short lived when Jayden was taken to have some drains inserted.  Later that day he had a respitory arrest and was back in ICU with a pleural drain for 2 days.  The rest of his recovery went drama free and at 5 weeks old was discharged home. 

At 11 weeks he was admitted to Goulburn Valley Base with Broncolitis/pneumonia.  The following morning his breathing was laboured so the NETS were called and he was flown by helicopter back to the Royal Children's.  When we arrived we were told he had not taken the trip as well as hoped.  The acid levels in his blood were dangerously high.  They were giving him a blood transfusion to try to counteract it but the best thing for us to do was say goodbye.  He was not going to make it through the night.  But our little fighter fought hard and he made it.  Over the next 2 weeks Jayden had numerous arterial cut down lines, was extubated twice and then re-intubated, he just couldn't cope breathing on his own.  A 3rd attempt was successful and he was transferred to 7 west and discharged after 4 weeks.  Not before a date was set for his next surgery.  On the 7/8/98 Jayden had a catheter with surgery set for 11/8/98.  At this stage he was the youngest at 4 months and the smallest at 5kg's to have this stage done in Australia.  They do this stage a lot earlier now.

Jayden's 2nd surgery 11/8/98

The surgery went well although he was a little unstable in ICU afterwards.  He was so puffy and pale.  His heart was racing and he was put on an external pacemaker for 48 hours.  He was extubated and transferred to 7 west at day 4.  2 weeks after surgery he was discharged.

Over the next months Jayden thrived.  He still had regular bloods done to check Warfarin levels but we finally got him into his own routine.  He learned to roll, talk, crawl and walk.  At 13 months of age Dr. Davis thought Jayden's Tricuspid valve was leaking enough to need more surgery.  We weren't expecting any more surgery for years.   

Jayden's 3rd surgery  15/6/99

Jayden had the surgery for his leaking Tricuspid valve at 14 months, the surgery went well, so well he was weaned from the ventilator after 9 hours, and was transferred to the ward the next morning.

10 days after surgery he was discharged after staying a few extra days due to a high temp.  The following week was re-admitted with the dreaded flu, explaining the high temp.

After a further 3 months on Warfarin it was changed to Aspirin. 

Jayden today with his sister Ebony.

Today, Jayden is a typical 4 year old boy.  Those surgeries seem so long ago now.  Physically they have not slowed him down.  He runs, rides his bike and annoys his little sister Ebony.

I used to get angry that his condition was not picked up at either my 18 week or 30 week ultrasounds, but after hearing others say they knew their child had a problem to this extent and their anxiety of giving birth knowing their Childs safest place was inside them, I'm glad now we didn't know.  I got to enjoy every day of my pregnancy and didn't have it weighing on my mind whilst I was in labour.

Cheryl Alexander.