It all started in May 1995. Jade was 9 days late but she was here and she was beautiful. After a good labour and birth we took Jade home to begin our life as a family of four. Jade was always a funny blue colour but the midwife said that was because she was born quickly and it should go after a few days. Therefore, when the doctor came round when she was five days old I had no concerns; he checked her all over and then he listened to her heart.
This is the start of our journey….
The doctor said that she was tachycardic, had a slight heart murmur and that she sounded like she had a heart defect, probably just a hole, but he told us not to worry and to take her to our local hospital in the morning for some tests.
We arrived at Southend Hospital the next day and were taken to a side room, where doctors started to do lots of tests on Jade. Over the next few hours her condition got worse; they couldn’t get a blood pressure reading, found it hard to get bloods and she didn’t want any milk or water – things were not looking good for Jade.
Jade was blue lighted up to Great Ormond Street and arrived just before 6pm where the doctors tried to find out what was wrong. By 8pm we knew: Jade had Hypo Plastic Left Heart Syndrome, a rare heart condition which means the left side of the heart doesn’t form properly and if not treated with surgery the child would die. Jade’s life hung in the balance but they said if she survived the night they would operate on her the day after; the next 36 hours was crucial.
Jade was just eight days old when she went for her first surgery – stage one of the Norwood procedure – and after twelve hours in theatre she came back to ITU with her chest open, but at least she had made it. Over the next few days the doctors started to reduce some of her medication and things were looking up but Jade had a setback when they closed her chest. At eighteen days old she went back into theatre to have a left BT Shunt done. We were back to the waiting game to see if she would be ok. Thankfully, she pulled through and things started to look a lot brighter. After three weeks on ITU Jade was moved to the high dependency ward. She still wasn’t feeding properly and so was being fed through a tube. However, she soon started becoming stronger and putting on some weight: things were finally looking up for Jade.
September 23rd was the start of Jades next journey; one of survival. Jade’s Paediatric nurse came out to check on Jade and noticed that in the last few days she had gained a lot of weight. Again I was pleased, however I should have been worried. We went back to our local, where after a scan, it showed that Jades heart had started failing. All the weight that Jade had put on was fluid and it was putting too much pressure on her heart. So back to GOSH for the cardiac team to have a look. Our fears were confirmed and Jade had gone into severe heart failure. Over the next twenty-four hours they tried to get the fluids down to see if that helped, unfortunately it didn’t, and so on the 24th September the doctors came round with the transplant team and said that Jade’s only hope was a transplant. She was four months old.
Great Ormond Street was going to be our home, Jade was placed on the active list and the waiting began. In the months to follow Jade had a Hickman line put in, we spent her first Christmas and New Year on the ward, then in January Jade had a respiratory arrest and was put on a vent for a week. She overcome that but still desperately needed a heart. Jade was constantly blue and her stats were, on a good day, up to 75 but mainly they were in the 60’s. By now her other organs were starting to weaken, we had days left. We didn’t want to give up but Jade was now so poorly we didn’t even know if she would survive a transplant.
February 24th 1996, we had just come back from watching the lottery and the Transplant team came and saw us by Jade’s beside, they had the news that we had been hoping for over the last five months, Jade was going to get her new heart. Mixed emotions came over us: joy because Jade was going to be given her second chance but also sadness at another family’s loss of their loved one. How could we ever thank them enough for what they are doing for our baby?
Jade went down to theatre just before midnight and she came back to us at just after 9am the following day, 25th February 1995 was the start of Jade’s new life. The first thing that we noticed was that she was a lovely pink colour and her lips were so bright it all seemed so unreal. Over the next forty-eight hours they turned down the vent to wean Jade off and get her breathing for herself, which worked. She was starting to laugh, smile and kick her legs about. She hadn’t moved about that much before and it was amazing to watch her improve. The day came for the doctors to remove the vent and see how Jade would cope; she didn’t so the vent went back on. They tried another couple of times over the next two weeks but still no luck. Jade was taken back to theatre for a Broncospy, to check for any damage to her airways and the news wasn’t good. She had vocal cord palsy and the only chance for her to come of the vent was to have a tracheotomy put in her neck. So a month after her successful transplant Jade was back in theatre. Over the next two months Jade was weaned down to just having a small amount of oxygen via her trachy and we started to think about going home.
Or so we thought.
After spending Jades first birthday at GOSH and with her still not eating and continually being sick we then discovered that Jade had a hiatus hernia and she needed her diaphragm fixed. She had a Nissans operation, where they put in a gastrostomy tube into her belly to help her feed. Heart wise she was perfect but it seems that the wait for her heart has put so much pressure on her other organs they needed more time to heal.
When Jade was fourteen months old we finally got home, five months after transplant and ten months after having heart failure. She still had the trachy and her Gastrostomy but she was happy and that was all that mattered. Jade continued to grow, slowly and as her medicines started to reduce things started to get a bit easier.
We have started to learn a few simple signs and Jade is getting stronger and is able to stand on her own now. In January 2000 Jade developed Haemolytic Anemia – a big setback as this could have cost Jade her spleen or even her life. After a short stay at GOSH, blood and some very high doses of steroids we went home again. Then in March of that year Jade had a bronchoscopy to see how her vocal cords were doing, everything looked good so they planned to take them out within the next few weeks. After yet another minor setback and six months later, the trachy was out after four years – now we just have to get rid of the Gastrostomy.
Jade started school just before her 5th birthday, where she continued to thrive and do well. Her speech is coming on very slowly and her mobility is improving and heart wise yet again no problems. By her 7th birthday Jade was walking and eating and even saying a few words. The Gastrostomy tube is out and with fewer trips to the hospital we are finally beginning to feel like a family.
Jade is now sixteen years old and very happy, she still has learning problems and her speech is limited but she is here fifteen and a half years post heart transplant. From going from having only a few days left to live and then maybe only having an extra five years after transplant Jade has proved everybody wrong. We know that time is not on our side but we are going to enjoy every minute of it: don’t ever give up the fight.