Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


Adam

Make a Donation

Find Max Appeal on Facebook

Join Max Appeal

Kieron

Chapter one - The arrival

KieronAt 28 weeks pregnant I was sent to Lister Hospital, our local hospital, by my G.P with tightenings in my stomach. I was monitored to find contractions were coming every 8 minutes I was given drugs to stop them but the doctors had called the air ambulance to be on stand by. 24 hours later I was sent to the ward to be monitored again. I had a scan 2 days later, which revealed that there were no problems and the baby was fine.

Saturday 8th April 2000, I went back to Lister with pains again, had pethidine and Gas. Pains continued but the nurses decided to call my husband, Chris, back to the hospital. I was then taken down to operating theatre where the doctors decided to break my waters. After the doctors were so surprised with the amount of fluid the baby started to turn around, it was decided that I would need an emergency section.

Sunday 9th April at 7.25am Kieron Christopher Hayes was born weighing 5lb 7oz, not bad for a 5 week premature baby. Kieron was taken to Special Care for only 2 days.

Thursday 13th April - Kieron was noticed to be slightly Jaundice so he was placed on an Ultra Violet mattress over night.

Friday 14th April - Kieron arrived home doing well, his weight naturally dropped to 5lb 2oz but he was gaining again slowly.

Monday 24th April - Kieron was having trouble breast feeding from me so I decided to put him on to SMA Gold formula myself.

Tuesday 25th April - Kieron was being sick on his feeds so I told the mid-wife but she said it was quite normal. She weighed Kieron and he weighed a healthy 6lb 12oz so that put my mind at ease.

Chapter 2 - A Turning Point!

Friday 26th May - I took Kieron with me for a regular trip to see my parents, he decided he wanted a feed so mum did it for me. She said that Kieron was really gulping at his feed I said that was quite normal for him, mum then started to get Kieron's wind up but then he stopped breathing. There was major panic, Dad called for an ambulance, me and mum were screaming but then something just clicked in my head, I laid Kieron on the floor and gave him 2 small breaths in his mouth, then he was with us again.

We took him to Lister again and the doctors looked him at, they told me that he seemed to be fine now and that they would probably send him home after being seen by Dr Hyde, Listers Paediatrician. We felt more at ease by this time.

Dr Hyde examined Kieron along with one of his team. They had trouble finding Kieron's veins so he had to have blood taken from a vein on the side of his head. By this time I was getting really worried because if he were fine surely we would be on our way home by now. Dr Hyde came to talk to us to tell us that his first thought was that Kieron had reflux but now he thinks that he has some sort of heart defect. We were then taken to Harefield hospital in Uxbridge by "blue light" along with Dr Hyde. Harefield gave Kieron a detailed scan of his heart and lungs only to confront us with our worst nightmare." Kieron has a heart condition called Truncus Arteriosus " the doctors told us. After them telling us what this condition was and that Kieron would need operations to correct the defect our head was full of questions like - WHY?

Sunday 28th May - Kieron had to have a detailed x-ray and another scan done which meant that he would have to be anaesthetised. He came back ventilated which was a shock to the system for us all, he went to the Intensive Care Unit and the following day he was able to come off the ventilator.

Tuesday 30th May - we hoped to take Kieron home but after more blood tests were done it revealed that he needed a blood transfusion. I had no sleep now for 4 days and now it was getting harder to take things in.

Thursday 1st June - Kieron was transferred back to Lister where he stayed overnight, his blood count was done and it was fine. The doctors decided to put Kieron on SMA High Energy, mixed with his normal formula, to build him up ready for the operation he would have soon. I had a lot of help from the Cardiac Outreach team via Lister, they lent me a monitor to keep an eye on Kieron's heart beat and came to our home to do regular checks on Kieron's stats.

Chapter 3 - The Heart Repair

Saturday 10th June - I received a letter from Royal Brompton Hospital to say that his operation had been scheduled for the 19th June. I knew Kieron had to have the operation but now that everything seemed to be moving it seemed more 'real'. The operation was cancelled 2 days before the date because of bed shortage and now re-scheduled for Tuesday 27th June.

Monday 26th June - we arrived to settled Kieron in for the night. We couldn't stay with Kieron because there were no beds available so Chris and I travelled back to Stevenage.

Tuesday 27th June - we couldn't sleep all night but when we did nod off it was in the early hours in the morning. When we woke up we knew we were going to be late, we phoned the hospital and they said that they would wait for us to arrive before Kieron went down for his operation. What a relief! We got to the hospital and at about 9.30am we took Kieron down to the operating theatre and began the wait.

Kieron came back up to PICU at about 1.30pm and at 3pm we were actually taken in to see him, the doctors had told us what to expect but nothing could have prepared us for what we saw!!

Wednesday 28th June - doctors told us that Kieron was doing fine and that the operation itself went fine and that he should be able to be weaned off the ventilator. That same afternoon Kieron had what was explained as "episodes". His heart rate and stats went sky high and this resulted in him being bagged out of these episodes.

Thursday 29th June - Kieron now had a tummy bug on top of everything else.

Sunday 2nd July - Chris and me left our room, that we now had, early in the morning to go and see Kieron only to stand at the end of his bed to see him so blue. The nurses then asked us if we thought he was blue, "of course he is blue" we replied. The nurse then went of in a hurry to call doctors to see Kieron. We were asked to go and wait out side in the corridor, we were watching doctors and surgeons WALKING up the corridor to go in and see Kieron. After waiting an hour, not knowing whether our son was alive or not! We were called in to see the doctors and nurses in a side room only to be told that Kieron's ventilation tube had got blocked and that he had a cardiac arrest and collapsed left lung. The doctors said that although Kieron's brain had been without oxygen for about 2 minutes other children had had this happen and the brain hadn't been damaged but they couldn't telling us whether Kieron's was or not. Kieron was now on the critical list.

Monday 3rd July - Kieron was still having these so- called "episodes", at 5am he had an x-ray to look at his lung and to see how his heart was coping. He had minimal fluid around his heart but we were told that it would probably disperse on its own. Later that afternoon the fluid was drained because it had built up quickly. 9pm that evening Kieron's medications were halved and the Nitric Gas he was on was turned off which was a huge step forward in itself. Kieron had been 'Barrier nursed' because of the tummy bug.

Tuesday 4th July - tummy bug is now cleared and ventilation was turned down again but Kieron had another episode so the ventilation stayed where it was for the day.

Thursday 6th July - Kieron is now suffering from "Cold Turkey" due to the medication. The swelling had reduced from Kieron's face and body.

Friday 7th July - Told by doctors that Kieron is coping well and should be strong enough for his ventilation to be turned off in the next 24 hours.

Saturday 8th July - Nurses tried to turn down ventilation but Kieron's blood gases dropped and he now needed a lot of suction.

Sunday 9th July - Ventilation tubes were taken away completely, now we can see our baby's face again, a great joy for us, although he has a small tube for oxygen in his nose as well as a feeding tube.

Monday 10th July - Kieron was tried by my self to be bottle fed, he struggled but nurses explained that he had to get used to the bottle again.

Tuesday 11th July - Kieron was moved to General Children's Ward, he still would not give up 0.2ml Oxygen. Two weeks later, after various tummy bugs, Kieron was transferred back to the Lister Hospital.

Everything was arranged via cardiac outreach team for the installation of oxygen piping to be fitted at our house, ready for Kieron to come home.

Chapter 4 - DGS

Between that time and ten weeks later Kieron had been doing well, despite many coughs and colds, we attended what we thought was a regular appointment to see Dr Hyde only to be told Kieron had DiGeorge Syndrome. We were in total shock to say the least without learning that these tests were carried out in the beginning of June.

There was confusion of "Who told who" because the test results came back to Harefield at the same time Kieron was transferred to the Lister, Harefield thought The Brompton would have informed us but Brompton thought we had already been informed.

But nobody bothered to Check with Me and my husband to make sure we knew the Full extent of Kieron's Condition and all the future problems that could arise.

We were told that we would receive an apology letter from Brompton but despite chasing this matter up we still have received NOTHING.

We have found all information ourselves, via the inter-net, about DiGeorge Syndrome because every doctor we have had contact with either knows nothing about this condition or very little. We knew about the live viral injections and informed our local baby clinic about this straight away. On taking Kieron to the clinic I double-checked with them that the immunisations were safe for him to have and they reassured me that YES they were. After Kieron had had the immunisations we found out via Great Ormond Street Hospital that the Polio drops Kieron had been given WERE in fact live viral and SHOULD NOT have been administered.

Two weeks later Kieron came out in a nasty rash, Chicken-pox like, on taking him to a G.P we were told that it was a viral infection but he had no other symptoms to relate to a viral infection. This doctor was an emergency stand-in because this was on a Sunday. I was still unhappy because 24hrs later Kieron had a serious case diarrhoea and had gone through about 200 nappies, we took him to Lister a couple of times due to us being so worried. It was then picked up that Kieron was suffering from a Rota-Virus. I know that I'm not a doctor but I can't help but feel that may be the immunisations had something to do with this.
KieronAt this time Kieron seems to be doing fine and his weight is going up week by week we are just concentrating on various appointments that we have to attend at various hospitals and we think may be we are starting to get on top of things, slowly but surely.

Mr & Mrs C. Hayes.