From finding out about Hope’s CHD at her 20 week scan and a hospital stay during the pandemic to having two open heart surgeries in 5 weeks, Hope (5 1/2 months) has fought every step of the way.
Heart mum Leanne talks us through her daughter Hope’s journey with congenital heart disease so far while Hope still stays at the Leeds Congenital Heart Unit…
My 20 week scan was a day I will never forget. A day I was alone due to COVID. The scan took longer than usual and I kept having to change position. They also asked me to take a walk for a few minutes.
I just thought they wanted her to change position but then I saw a doctor go in with the man that had been scanning me and when he left they called me back in. I had that gut feeling something was wrong.
When I went back into the room they started telling me about how they think the baby has cleft lip. I had a sense of relief as I know these things can be fixed. But then he brought up the heart defects and my own heart dropped. The midwife took me into a separate room where I rang Mike my partner and Hope’s dad. After hanging up the phone I just broke down into tears.
They couldn’t tell me the full extent of what was wrong because they couldn’t get a clear enough image. They referred me to specialists in Leeds for the heart and Sheffield for her cleft lip. We were unable to find out the sex too because of her position. But on 18th September 2020 we found out IT’S A GIRL!!!
Through out the pregnancy I had regular scans and we never got a clear picture of her lip as she either turned away or covered it with her hand.
New years Eve I went for a scan and they kept me in. Estimating her at 9lb they said a c-section would be safest option because my daughter had shoulder dystocia and was smaller.
Two days later on 2nd January 2021, Hope was born weighing 8lb at 5.13pm. she came out lovely and pink and crying, no cleft lip either. After a scan of her heart the diagnosis was, double outlet right ventricle of the ToF type, Vsd and severe pulmonary stenosis.
Over the next few days, Hope was doing so well and exclusively breastfeeding so on the 7th January we were transferred to Barnsley Hospital and closer to home.
Hope needed the blue lights a few times as jaundice kept creeping back. Her feet were so sore from all the blood tests to check her blood sugars and jaundice levels.
We also found out she has congenital hypothyroidism (born without a thyroid gland) and will need medication for life to replace what the gland would have produced.
On the morning of 19th January the nurse did a random monitor check to see what Hope’s heart rate and oxygen levels were.
Hope’s oxygen levels were in the 60’s and then dropped to the 50’s. This was where everything got crazy. Nurses came in with oxygen and then the doctors.
The next minute we were in a different room so they could help Hope better. The doctor in the middle John Paul (JP) was amazing and knew what to do as well as explaining to everyone else. If you’re reading this, thank you so much.
Hopes pulmonary artery that was narrow had started to spasm and close, so no blood could get to her lungs. They managed to stabilise her on intensive care but later that day it did it again and so we were transferred back to Leeds.
Hope was doing really well in Leeds she was on the congenital heart unit in high dependency Ward L51. She later moved into a private room where I could stay with her. But all through the night her sats kept dropping really low again. She had another two spells so was moved back onto high dependency.
On 22nd January, Hopes sats was up and down all day and she kept having the spells. They gave Hope morphene to stop a spell but it also stopped her from breathing.
Staff had to work on her, she ended up on a breathing machine and kept doing little breaths on her own but sometimes stopped.
The doctors said she needed a stent fitting to keep the artery open. I signed all consent forms and she was due to go down for her stent the next morning between 10 and 11am.
23rd January: Hope went down to theatre for her stent fitting at about 11.40am. Me and Mike, Hope’s dad walked with her and then left her in the doctors hands.
We went for a walk around Leeds to keep our minds busy and got a call about 1.30pm saying she was back on the ward and everything went well. We rushed back over to the hospital to see Hope and also speak to her consultant.
It turns out she needed two stents fitting and she had severe pulmonary stenosis so even hiccups could trigger the spells. Amazing how they did this by key hole and the only mark she had was a spot on her neck. Her oxygen levels were now above 90 and the surgeon said she handled it all really well.
On the 26th January we were allowed home. There was a long wait for the medication and a quick scan to check everything was fine with the stents.
We got home late that teatime and Hope finally got to meet her very excited brother and sister for the first time. We had a surprise banner and cake waiting for us with Hope’s Nannan and Great Nannan waiting too.
On the 9th February we brought Hope to Leeds for a heart scan. They only had one small concern and that was that there was some muscle growing on the entrance to her stent, causing some obstruction. They said they would keep a close eye on it and that if anything was to happen we would recognise the signs.
Every Friday the district nurse came to our house to weigh Hope and check her levels.
On the 23rd March, Hope’s oxygen levels was in the mid 60’s, they came up to 76 a few times but went straight back down again. The nurse rang Leeds LGI and we were advised to go to Barnsley hospital to have her monitored.
Hope spent the night in hospital and her oxygen levels didn’t get any better, so we were transfered to Leeds, Ward 51 again. For the next two days Hope was having bad spells to the point her oxygen levels would drop into the 20’s, whenever she was awake even on Morphene.
I had to hold her while she cried and screamed with her knees to her chest to try calm her but in the end they had to sedate her even more so she was asleep. It was obvious Hope wasn’t going to get any better so they planned to take her down to theatre the next morning for open heart surgery to repair her heart.
On the 26th March Hope went down to theatre at about 8am and came out of surgery at about 3:30pm. Unfortunately they couldn’t do the full repair because her coronary artery was blocking where they needed to cut.
Hope didn’t react well coming off the bypass machine so needed medication to help and had a blood transfusion too. It took a while to stabilise her levels and she needed another blood transfusion due to losing blood during surgery.
Hope was on lots of Morphene so she couldnt feel anything and had a ventilator to breathe for her so her heart wasn’t working too hard.
On 27th March, Hope’s kidneys still weren’t functioning so she had to have dialysis to help them along. On 28th March Hope had her drainage tubes taken out and also came off the ventilator.
She had alot of fluid and was really swollen but the nurses reassured me that the dialysis machine would help get rid of it.
They made a make-shift tube called a shunt to detour the blood from a branch that takes blood to her arm into her pulmonary artery to take the blood to lungs.
Hope’s heart’s too small at the moment for them to do what they need to do so we was told she would need another operation when she’s a year old.
On 29th March, Hope took a step back. The dialysis drip wasn’t draining so she ended up full of fluid.
Then having to be sedated for another tube to drain her was too much. Hope ended up back on ventilator and also the heart medication which they had only stopped a few days before.
Thankfully the new dialysis system was working fine and draining as it should do.
By 31st March Hope was doing really well and came off the ventilator. She was peeing by herself so the dialysis was set to just drain out not put anything in.
Mummy finally got cuddles this day too and even a little smile from Hope.
2nd April Hope was well enough to come off PICU and onto Ward L51. She also had a weaning plan in place because she was withdrawing from the Morphene.
Later that day I had the scare of my life. One minute I was holding her and the next all the alarms was going off. Nurses and doctors acted so fast, they were amazing. Hope ended up with a blood clot in the shunt they fitted and it was blocking her blood flow.
They managed to dissolve the clot and flush it out really quickly. As soon as I heard the words ‘clot in her heart’ my head started swaying and I had to leave the room and get some air. When I came back she was nice and settled asleep.
4th April I got a call at 7am as Hope was being sent to Intensive Care. She was really poorly and they was still trying to find the cause. They thought her shunt was blocked again but also treated her for sepsis just in case. She was put back on the ventilator and sedated – they also gave her another blood transfusion.
On 7th April Hope went for keyhole surgery so the surgeons could take a good look around her heart and arteries. They were happy with what they saw but they said she did have some fluid around her heart. A scan showed she had alot of fluid around her lungs too so she was put on more diaretics to try get rid of it.
The next day she was taken off the ventilator but still needed oxygen. Hope’s oxygen levels started to dip and she was working harder to breathe. A scan showed she had more fluid on her lungs and they discussed the possibility of needing to drain them.
13th April Hope was taken to theatre to have drainage tubes put in. She needed one on each side for both lungs and she had to be on a lot of pain relief while she had them in because of how painful they are.
On 14th April Hope was doing really well and was able to come off the ventilator but still needed abit of oxygen to help her.
By 15th April we were moved back to Ward L51 again and Hope also had the oxygen tubes taken off as she was coping well without it. The next day she had her drainage tubes taken out. They drained 100ml of fluid from one lung and 95ml of fluid from the other. She also started having to work hard with her breathing so needed to go back on the vapotherm machine.
19th April was a great day for me. Hope knew when I came in the room and was a lot more alert. I managed to get her on video smiling and chuckling at me making baby babble. It was the best feeling ever to see her smile again.
On 21st April Hope started getting fluid build-up – making her breathe a lot harder and her chest was sucking in. They put her back on her heart medication and also treated her for a serious infection called NEC as she had some blood in her stool and stomach. However, later that day her infection markers came back and they was low so the main culprit seemed to be the fluid.
22nd April and Hope was given her first Katie bear with medal and certificate. These are provided by Children’s Heart Surgery Fund. Sarah who is the charity’s family support worker meets me every week and we always message each other.
She has been a big support for me not only with giving tesco vouchers and helping with travel expenses for Hope’s dad, but actually been there to talk to and having tea breaks. It helps so much knowing I have someone here in Leeds I can turn to for help.
By the 24th April we ended up back on PICU. Hope had fluid overload and had over a kilo of fluid on her. Over the next few days Hope’s tummy kept getting bigger so they did a scan that allowed them to check her heart out in 3D.
On the scan it showed her tricuspid valve wasn’t closing fully which was causing blood to leak back into her body and flood her liver making it become enlarged and very tender. There were talks about attempting surgery to repair her heart again but things kept cropping up to prevent it.
First they thought she had an infection so she had to have antibiotics, then her thyroid levels dropped too low so needed to come back up to a normal level before they could operate.
Over the week I felt completely rubbish, I was speaking to Sarah from Children’s Heart Surgery Fund about it all. She said I needed a pick me up.
Sarah booked a hotel room for Sunday 2nd May so my other two children could spend the night with my partner and me and we could all be together. I loved every minute of it being able to spend actual time with my children and it not just being a quick visit here and there. The hotel CHSF booked was close to the hospital too so if I needed to I could get there quickly. It was definitely something we all needed and I’m truly grateful for that day together.
3rd May Hope was looking really poorly. I knew she was really ill but she’s didn’t look it until this day. She was breathing and sucking her ribs in so hard, she looked so tired too. They wanted to avoid putting her back on the ventilator as with how poorly she is it can cause complications with her heart function. They gave her strong sedatives and it seemed to help her a little. We were told surgery would be in a few days.
Tuesday 4th May doctors were going to put Hope onto the ventilator ready for surgery the next day, I kissed her forehead and left the hospital while they got her ready. I was over at Eckersley House in the flat where I had free accommodation. The house is run by a charity called the Sick Children’s Trust and CHSF give a big donation to Eckersley House every year.
I think I was there a total of 20 minutes when I got a call from Emily one of the nurses telling me to get over as fast as I could because they were having to resuscitate Hope.
I rang Mike on the way over and he set off to Leeds as soon as he could. It took them 2-3 minutes to get Hope’s heart beating again. When I got there everyone was stood around her cot and they still needed to get her on the ventilator. I was advised to wait outside while they got her on it. While I was waiting her daddy arrived and when I got the call we both went up together.
When we got in we were told things weren’t looking good and Hope’s body was showing signs of shutting down. My whole world came crashing down. The doctors kept saying sorry and that it wasn’t looking good but I was just numb and heartbroken and Mike was a mess too.
They did more tests and it showed her lactates had lowered to 8 but still very high. I don’t know how long we was stood there stroking her head, holding her hand, kissing her face but they did more tests and her lactates were then at 4.5. They said it was good that it was coming down but she was still extremely poorly.
Later that night we went over to the flat and didn’t get any sleep at all. We rang a few times through the night and her lactates had come down to 3 and hovered around that number all night.
The next morning, Wednesday 5th May, we got a call asking us to come over to speak to the surgeons. When we got there they took us into a private room and we all sat down in a circle. They started to tell us about how they knew she was really ill but what happened yesterday showed them she was alot sicker than they thought.
They said we had 2 choices, make her comfortable and be with her but she would only have two days left at the most or attempt a high risk surgery to shut the leaking valve off completely, leaving Hope with only one pumping chamber and a good chance she wouldn’t make it through surgery.
They said they don’t think they will ever be able to repair her heart but if this surgery worked it will allow more time for more plans, maybe even transplant further down the line but they’re not looking that far ahead yet.
We decided to go for the surgery. We couldn’t not. No way were we going to give up after she’s been fighting so hard to survive. She went down to surgery at about ten past 11, I think. My head was a mess at that point.
Before she went we painted her little hand and foot and got her prints on canvas. They said it could be about four hours before we hear anything, if nothing happens before.
Six hours later we got the call that she was out and stable we just had to wait while they got her all set up on PICU. When we got over we had a chat with Carin Van Doorn, Hope’s surgeon. Her heart is definitely unrepairable so what the future holds we don’t know yet.
They had to put a patch over her tricuspid valve to completely block it off because it had a tear in it and was very fragile so would tear again. They inserted a big, long stent into her pulmonary artery to open it up nice and wide and closed off the shunt they put in six weeks before because she can’t have both.
The hole in her heart they made a bit bigger so the blood can mix more now she only has one pumping chamber available. Her stomach was large and congested from all the blood leaking back into the body, so they’ve put a drainage tube in and it looks so much better. She came off the bypass machine a lot better than they expected her to and said her heart was strong.
They’re really pleased with how the surgery went.
Hope’s kidneys, lungs and liver have taken a big hit and need time to heal but she said it’s something that they can manage.
Now we just take each day as it comes and plan as we go. Carin said Hope’s not out of the woods yet but how she looks now is promising. They only needed to use a pacemaker for a short time and her heart started doing it all by itself.
6th May I rang the ward as soon as I woke up. Hope had a bit of a bumpy night but they said that’s to be expected. Her lactates rose to 8 but came back down to 3 again.
They also had to use the pacemaker for a while because of her heart rate slowing and give her a blood transfusion as she was losing a lot of blood through her drains. On this day we also finally got to register her birth after 4 months. The past 48hrs had been crazy so this moment was huge to us being able to register her and there was plenty of tears of joy.
Later that day we also had a visit from Sarah from CHSF. She came to give Hope her second Katie bear with medal and certificate.
The last few days Hope has been stable and doing great, she even made our local newspaper again back in Barnsley!
They’ve taken her off the medication that paralyses her and she’s now moving her hands and feet. She’s still on the ventilator at the minute but it has been turned down to 50%.
Every day she amazes us with her strength. She’s a true little warrior and we love her so much.
UPDATE
On 14th June 2021, after spending three months in hospital, Hope was discharged from Ward L51 and is now at home with her family in Barnsley.
You can follow Hope’s journey with CHD on her Facebook page.
On #WarriorWednesday, we celebrate the amazing heart heroes we support in our region.
We tell their stories to raise vital awareness of congenital heart disease and recognise the care of the Leeds Congenital Heart Unit.
If you would like to make a regular or one-off donation to help fund CHSF’s life-saving work, you can do so here. Thank you.
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