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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    Jade Licence story

    Jade

     

    It all started on the 25th 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 4.  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. So when the doctor came round when she was 5 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 tacky cardic, she 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. I phoned Matt and he came home from work to help me sort out things for the next day, we arranged for Matt’s mum to have Aaron (Jade’s older brother) and gave Jade a nice bath, which she didn’t like. She went bluer in colour and was squeaking like a mouse but we just thought that she didn’t like the bath.


    We arrived at Southend Hospital the next day and taken to a side room, where doctors started to do lots of tests on Jade. Over the next few hours Jade’s 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. The doctors came in and said that they were going to transfer her to the Royal Brompton Hospital in London but they couldn’t see her until the morning so they made the decision to send Jade to Great Ormond Street instead. The next few hours were a blur, us not really knowing what was going on, Jade getting more and more distressed and the doctors and nurses running all over the place then at last we were on our way.

     

    Jade was blue lighted up to GOSH 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 where 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, they said if she survived the night that they would operate on her the day after, the next 36 hours was crucial.

    Jade

     

    Jade was 8 days old when she went for her first surgery, stage one of the Norwood procedure and after 12 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 the medication and things were looking up but then Jade had a setback when they closed her chest.

     

    At 18 days old she went back into theatre to have a left BT Shunt done. We were back on the waiting game to see if she would be ok. Again she pulled through and things started to look a lot brighter. After 3 weeks on ITU Jade was moved to the high dependency ward, she still wasn’t feeding properly so she was getting her feeds through an ng tube but soon she started to get stronger and started to put on some weight. Things were finally looking up for Jade.

     

    After 6 weeks at GOSH we finally took Jade home. We knew that she would need further surgery but that wasn’t going to be for a while, so we planned to enjoy ourselves and took Jade to Clacton to meet the family and I started to go back to the mother and toddler group that I went to before all this began. For the next 9 weeks or so everything seemed so normal, apart from the NG feeds, vomiting and lack of sleep, Jade was home and we were a family.

     

    September 23th 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, where I should of been worried. We went back to our local, where after a scan, it showed that Jades heart had started to go into heart failure. 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, Jade had gone into severe heart failure. Over the next 24 hours they tried to get the fluids down, to see if that helped but it didn’t 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 4 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 sats 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.

     

    Jade 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, for the last 5 months, Jade was going to get her new heart. Mixed emotions came over us, joy for 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 Jade.

     

    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 48 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, as she didn’t move about that much before, 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 2 weeks but still no luck. Jade was taken back to theatre for a broncospy, to check for any damage to her airways. The news wasn’t good, Jade had vocal cord palsy 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 2 months Jade is weaned down to just having a small amount of oxygen via her trachy and we can start to think about going home.

     

    Or so we thought, after spending Jades first birthday still at GOSH and Jade still not eating and continually being sick we then discovered that Jade had a hiatus hernia, she needed her diaphragm sorted out and 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 need more time to heal.

    JadeWhen Jade was 14 months old we finally got home, 5 months after transplant and 10 months after going into 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.

     

    Over the next 3 years Jade continued to do well, Matt and I had another baby, Becky, perfect in every way and we have since discovered that Jade has some learning difficulties but at this stage we were not sure to what level. We have started to learn a few simple signs and Jade is getting stronger and is able to stand on her own now. We were coping with her trachy and gastrostomy on a day to day basis and living life as normal as possible, then 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, all looked good so they planned to take them out within the next few weeks. After yet another minor setback and 6 months later, success the Trachy is out after 4 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. Then by her 7th birthday Jade is walking and eating and even saying a few more words. The Gastrostomy is out and with fewer trips to the hospital we are finally beginning to feel like a family.

    Jade

     

     

     

    Jade is now 16 years old and very happy, she still has learning problems and her speech is limited but she is here 15 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 5 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.

    Jade

     

     

     

     

     

     

     

     

     

     

     

     

     

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