A rollercoaster ride for Ethan and his family.
Let me take you back to October 2007 a night that changed our lives forever…..
Our Saturday night was great, we’d been at a Halloween party and stopped over – little did we know that you had other ideas and wanted to join in!! You were born at 03.40am on Sunday 28th October 2007 after a 90 minute labour! I was in shock but you were perfect! Quiet as a little mouse!
The next day we were going to be discharged when as a check they do on all newborns they put an oxygen saturation monitor on your feet (they do this to all newborns at UHND). With the theory that if the oxygen levels in your feet are OK, then your heart is pumping correctly. Ethan’s saturations were 72% out of a normal 100%.
They tried 3 different monitors before they decided they needed to call a paediatrician. He came and took you away with the promise that they would either bring you back or come and get us. The midwives kept coming in and patting my back going are you OK? I knew then there was a problem but no-one was saying anything. They kept doing it and the more they did it the more irritating it was. The more I worried.
Eventually, the consultant came back with the other paediatrician. long faces. not good. They explained that you had Transpositional Arteries, that the arteries going into the heart were the wrong way round and the blood with oxygen in from the lungs, instead of going round the body was just going back to your lungs. Eh? We could see you in ICU if we liked, I can honestly say I have never been so frightened in all my life. Daddy stayed with you, I couldn’t stand seeing you like that I thought I was going to collapse in the heat.
They’d rang for the ICU Paediatric Transfer Team to come from Middlesbrough to take him to the Freeman Hospital, Newcastle….the freeman what?! where? Daddy decided to drive – a decision I wasn’t pleased with at the time but turned out good as we were able to concentrate on other things.
It was teatime, RUSH HOUR, GET OUT OF OUR WAY! Don’t you stupid people know we need to be with our little boy….every blue light set me off crying wondering if it was you – had something happened on the way?…
When we arrived they brought us to see you in the nursery you were crowded by doctors..doing what we now know as an echo..they then took us to a private room and explained that there was no quick fix. You had 3 major defects not just one. Bang, all at once our perfect family was over.
The parents on the ward with their children were a big support that night, more than they know I think. They’d been there and were able to reassure us that you were in the best place.
We left the hospital reluctantly at 10pm…and got home to a house full of baby things. That wasn’t right..where was our baby, Ethan should be here. We cleared it all away, not really knowing exactly what the future held for us as a family.
We were woken at 1.45am with a telephone call from the ward. Explaining that you had had a problem with your heart rhythm during the night and were being transferred to PICU, there was a chance that when we came in you could be ventilated as they had to give you a medicine to try bring it under control. She assured us that you were OK and that there was nothing we could do and we should get some sleep ready for the next day.
We tried. We got up and set off at 7am to make the 1.5 hour journey back to the hospital through the rush hour. I think if I could’ve bought a pair of Dorothy’s red shoes then I would! Looking back we have been thrown into this world, where the baby’s & children are wonderful angels on earth. Not a day goes by where I don’t worry about you – are you bluer than normal, is your breathing OK… and you just smile, laugh and get on with it.
The mums and dad’s amazing – there’s an understanding between us, You gain a huge amount of compassion and empathy. Every time one of us is dealt a blow we all feel it, every time we gain an angel a little piece of our heart is taken with them.
I think it was harder for us than it was for Ethan, My beautiful brave boy with his big smile. You don’t know what the future holds. You have to carry on regardless. I can’t believe your going to be one soon! My big brave boy – my little hero. On our first night in hospital with you a mum told me that special baby’s need special families. I guess that’s us. And we wouldn’t change a thing.
Wednesday, 31st October 2007
In October 2007 Ethan was born and he was in the Freeman hospital (Newcastle) for exactly 6 days when he was born. He had a balloon septostomy at four days old, not such a big thing now but at the time it was massive……… they’d told us that you didn’t need surgery yet… then they came to see us one morning and they had decided that you definitely needed this septostomy. The cardiologists and surgeons had decided to perform an operation called an Arterial Balloon Septostomy. This would keep the duct that all newborns have in utero to bypass the lungs (that aren’t in use) open. This would allow the oxygenated blood to pass through the hole in the top two chambers and also the VSD (the hole in the bottom two chambers) and therefore be pumped around the body. It would also allow you to grow and put on weight before they did another palliative operation. They took you down to the operating theatre at lunch time My heart broke as I left you on the operating table, he held my finger so tight while he was being anaesthetised I nearly passed out – his arm swelled up like Popeye because the cannula slipped – it was awful. Thankfully all went well and you were back on the ward again after 3 hours (the longest of my life!) I spent the next couple of days holding your arm up to try let the fluid drain out! I even managed to get a bit out of the hole where your cannula had been – ha ha
Thursday, 1st November 2007 11:13 AM, GMT
Dr O’sullivan, your cardiologist explained to us that as you grew bigger the thing currently saving your life – the Pulmonary Stenosis (narrowing of pulmonary artery leading to your lungs, therefore keeping pressure down) would cause you to turn blue, gradually as your lungs could no longer keep up with the demands of pumping the blood through the narrowing. You would need another operation called a BT Shunt, they would put the shunt into your heart. Attaching it from the artery in your right arm to your aorta. This would allow further oxygenated blood to go to your lungs and then be pumped round your body. That was a lot to take in.
Friday, 2nd November 2007 11:17 AM, GMT
Good news they were just keeping him in until he was stable on the drug for his arrhythmia’s and then we could go home !! Joshua and Nana came to see you today it was lovely. YAY!!
Saturday, 3rd November 2007 11:21 AM, GMT
Another day on the ward, by this time we feel like old hands! our confidence in the hospital has grown and we have met the social worker and cardiac liaison nurses. We can go home tomorrow! Wonderful!
Sunday, 4th November 2007 11:23 AM, GMT
We took you home today, it was a wonderful feeling!! At the same time we were very anxious, what if something happened? What do we do? We watched every little movement – you even came home without a naso-gastric tube like most cardiac baby’s come home with…. you fed with the bottle, it took a long time but you managed.
Saturday, 10th November 2007 11:25 AM, GMT
We settled down to life at home with Joshua, Daddy went back to work. We had a few little wobbles where we worried but nothing major! The home care nurses were coming in and all was well. Sats 80%’s
Tuesday, 18th December 2007 11:27 AM, GMT
Today we rang the CLN, You were very blue and your SATS had been around 68-70% for 3 weeks now. When I think your ears, nose, lips, fingers were blue. You were also quite grumpy and I couldn’t figure out why. So we took you to the ward, they said you were pink. Obviously they are used to dealing with very very blue babies!! When they did the echo, I was right the pressure in your lungs had increased and you needed your operation. Blimey!
Monday, 24th December 2007 03:04 PM, GMT
It’s here !! we got bumped from first on the list to lunch time as an emergency transplant came in. Poor thing wasn’t allowed anything to eat or drink, but you didn’t really have the energy to complain. Though I walked miles back and forward on the ward to keep you happy in the silver cross. Eventually they were ready for us, we wrapped you in your blanket and walked up to theatre with you in my arms…I pinched every last cuddle and kiss I could before you went into theatre..I cried so much I set the nurse & Grandma off! Oops Mr Hasan was your surgeon. We left you in his capable hands. Can’t imagine that he’ll work on your heart – its only the size of a plum apparently. 5 hours you were gone, 5 long hours. We waited patiently, then we were told we could come and see you on PICU. When we went up your anaesthetist was there keeping his eye on you, lovely man. It was a bit much for Daddy to see and he had to go and get a bit of fresh air. Me and Grandma stayed with you. Daddy soon came back I couldn’t get over all the wires, I was reduced to stranger mum – like the first day we came on the ward. I couldn’t bear it, but if they made you better I could just about stand it (didn’t have much choice really did I?). Me and mum decided to go to the Xmas carol service in the chapel at the hospital … I remember the first song was something about baby Jesus and just couldn’t stop sobbing. I looked so silly, I left and came back to see Ethan.
Tuesday, 25th December 2007 03:20 PM, GMT
Xmas day, Joshua came up to see you today. Santa left a BIG bag of pressies… you were asleep so we’d just have to wait. Still, we put your My First Xmas jumper over you and took your picture, its not like we can do it again!! We spent the morning with you and Joshua, then we went down onto the ward and had our Xmas lunch in the play room sat on the tiny chairs and tables !! We looked so stupid!
Joshua went to Nana’s house and we stayed with you until about 6 then we decided to go for a drink. To be honest, the nurses were so happy, but I couldn’t celebrate I was annoyed that everyone was getting on with their lives when we were stuck in this nightmare. I just wanted to tell them to stop singing and laughing. But in the end I settled in a bit and relaxed… sitting next to you.
Wednesday, 26 December 2007 03:27 PM, GMT
We came over from the flats, you’d had a good night and were doing well. A few arrhythmia’s but nothing major so they restarted the amioderone. They talked about taking you off your ventilator later or tomorrow as you were doing some breaths yourself. There was a little girl in another bed a tiny baby who wasn’t doing very well, her family were coming to say goodbye before they turned the life support off. They were everywhere (the family) sobbing, it wasn’t nice she was obviously a very loved child. We felt awful, guilty as you were OK. We decided to leave the ward for a bit and give the family some more privacy.
New Years Eve, 31st December 2007
We were discharged today, you had done very well post op and we were discharged again without an NG tube it was dark so must’ve been about teatime… we were really happy to be home but felt as if Xmas had been pinched! So we arranged to do Xmas day on New Years
3rd January 2008
We took you back to the Freeman as you wouldn’t feed, they put another ng tube in and discharged you. I had to pinch some large syringes as we had nothing at home. I didn’t even know how to do ng feeds properly, I only knew if they went in OK – any problems and I was on the phone to a friend from the hospital who was used to ng feeding.
10th November 2009
Thank you for thinking of us xxx
We are home today and tbh feel very frustrated. He went down for his catheter and we left him on the table at 11 – he didnt come out until 2! He was not back on the ward until 3, I think they were having a few problems waking him up – said “he could sleep for england”!
He came down onto the ward with no oxygen which was good. They did the cath, and an endoscopy and angiogram.
The cardiologist came back down and said “everything was as expected. Nothing critical and asked how quick would I like the operation for him?” I said “tomorrow because of the way he is”. He said “we are looking likely in the new year”. Brickwall surely its unfair to leave him the way he is?? puffy tired etc.
The trouble is, he is too little to do the Rastelli and they would like him to gain weight – but he has gained 0.05 kilo in two weeks! I asked about putting another shunt in as I was told previously that was what they were going to do – and he said “well I suppose you could put another very small shunt in…”
So we just have to wait.
Didn’t get much sleep last night as his monitor kept going off his heart rate dropping to 71 and sats sitting at 72 ish… but no the nurses never bothered. So I’m wondering if 71 is a normal sleeping heart rate?
On the other hand I am feeling very lucky as there were two little boys in hospital awaiting transplant. One of which was very very went on the berlin heart yesterday so I am thinking and praying for them both that they have the strength to wait xxx
Rastelli v Nikaidoh
Wednesday, 3rd February 2010
They are also doing it now before he starts school as apparently they are starting to do them sooner so he can get a good few years in school before his next op. We are looking at 2-3 more operations after this to get him to his 20′s; after that they don’t know, as they don’t have any figures for people beyond 30-40 years old. But, the likelihood is that he will need more to correct leaks etc.
It’s an all day operation and he has done 10 rastelli’s in his career – he said “it is a very rare op, but that all patients that have had the op
are still with us”!
There is a 10-15% risk (“a moderate risk” he said) and 4-5 days in ICU, 10-15 days on the ward.
That’s a hell of a lot longer than I thought it was – I am confused. We need to see Dr Spencer (the respiratory doc that discharged us) to get his chest sorted as he is really wheezy.
He took my mobile number and I have to wait for a phone call. So now I’m waiting and I think its starting to sink in…. x
Written by Samantha Lloyd, 2008-2010
If you want to continue to follow Ethan’s journery with CHD, you can follow him on Samantha’s Blog called Diary of a Cardiac Mummy
Samantha Lloyd has given CHD-UK permission to use photographs for this page.
Great art work for your home or even for your child’s teacher. The artwork is created to order and every piece is different, and therefore takes time to create. Click on the link to view Hearts for Hearts
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