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AMA

I’m the mum of a daughter who had a heart transplant. Ask me anything.

15 replies

QuackPorridgeBacon · 18/07/2018 21:45

Not sure if anyone will be interested but if I can answer something I will.

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NameChangeCuddleBums · 18/07/2018 21:50

Hi. How long ago did your daughter have it? How long was the operation? How long was her hospital stay? Thanks

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QuackPorridgeBacon · 18/07/2018 21:55

Hi. How long ago did your daughter have it? How long was the operation? How long was her hospital stay? Thanks

She had it October 2015. It took six hours, it went much quicker than we were expecting. She was in hospital from birth until eight months old. She had the transplant at 3 months old so was in for five months post transplant.

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BeansandSausages · 18/07/2018 22:12

How is she doing?

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ProudThrilledHappy · 18/07/2018 22:13

If you could meet the donor’s family, would you want to or would you prefer to remain anonymous?

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QuackPorridgeBacon · 18/07/2018 22:38

She’s doing really well. No issues with her heart but gets bugs and colds pretty often.

I think I would like find out more about the donor and wouldn’t mind letters, see if meeting them would feel ok after that. At the time though, I said I didn’t want to. I wouldn’t have felt comfortable knowing how well my baby was doing and the fact they have lost a baby. I think they are very brave and I am extremely greatful that they donated their babies heart and gave my daughter a chance at life. I just didn’t want to impose on their grief and felt they needed time to mourn and not be reminded. I may be wrong in that thought process though, I’m actually thinking of getting in touch with her team and asking for more details. At the moment I don’t even know if it was a boy or a girl or their age.

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ProudThrilledHappy · 18/07/2018 22:53

Thank you Quack, I hope your dd continues to thrive x

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NameChangeCuddleBums · 19/07/2018 02:15

Thanks for answering. If I may ask another question - if I have calculated right your daughter is a toddler now, what is her current understanding of the situation? It’s reallu great she is doing so well Flowers

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lostinjapan · 19/07/2018 02:38

Could the donor heart potentially last her for the rest of her life, or would she need a replacement at some point?

Does she have to take anti-rejection medication for the rest of her life, and are there many side effects?

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QuackPorridgeBacon · 19/07/2018 14:25

She doesn’t have much understanding really. She knows she has to get her bloods done but she doesn’t know what it means other than it hurts her. She knows where her heart is and we’ve always called it her new heart or her borrowed heart and how another baby gave them their heart so she could be alive. Not sure how much of that she actually understands though but we hope that by keeping it normal she doesn’t grow up scared or feeling uneasy about it. She is three now but has developmental delay. She has only recently started walking, not long before her third birthday but she doesn’t talk, just babbles. She can do a few signs which is helpful.

We have been told to expect between 15-25 years. But there are some people who have lasted over 40 years with a donated heart. It varies quite widely I think. Once her heart starts failing she will have to wait for another one, however, the waiting list can usually be longer although there are more hearts available she may not get as lucky. She has anti rejection meds that she will be on for the rest of her life, if she misses her doses it won’t be good. We’ve been warned that the teenage stage is hard because they think if they feel fine they don’t need the meds. The major side effect of these meds is the lowering of her immune system which makes her susceptible to every bug and cold going lol they also have to be regularly checked because if the dose is too much one way it can affect the kidneys and too much the other way and it affects her heart. She seems to be lucky though and has had no isssues and we’ve been told that surprisingly (for her age at the time) she has built up her own immune system and that seems to help fight things off. She’s a trooper though and she tends to get on with it and battles on.

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NameChangeCuddleBums · 19/07/2018 14:51

I hope your daughter has many many many happy years with her heart.

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Insulater · 19/07/2018 16:49

When did you first know there was a problem? Does she go to nursery? Wishing her many happy years Smile

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hungryhippie · 19/07/2018 16:51

Is she on tacrolimus and prednisolone? My son had a liver transplant and these are his main drugs.

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QuackPorridgeBacon · 19/07/2018 17:13

NameChangeCuddleBums Thank you, we hope so too.

When did you first know there was a problem? Does she go to nursery? Wishing her many happy years smile

When I was pregnant we did get her heart monitored twice as they thought there was a beat skipped but it turns out that was an issue with the machine, so no worries throughout pregnancy. I went 10 days over and had to be induced, she was born purple, struggling for breath but also had the cord around her throat. Doctors cut the cord and brought her to be suctioned. All was fine, still very purple and a bit sleepy but was told to keep her warm. She was born in the afternoon but we stayed in that night just to keep an eye on her. She fed straightaway for a whole half hour with a strong suck but then I stopped so I could have a coffee, she never fed from me again. It was very late and I hadn’t stopped holding her and had noticed she was very sleepy, didn’t cry, wouldn’t feed, had bubbles constantly around her mouth and when I went to change her nappy I noticed she was taking really deep breaths causing dents in her abdomen. I called someone over and explained about the feeding etc I hadn’t really registered her breathing if I’m honest, she got some colostrum from me in a syringe and still my baby wouldn’t take it, she popped open her all in one seen her breathing, picked her up and walked off saying “I’m sorry I have to take her.” That was it, she took her. After sitting for ages wondering what was happening I went and begged to see her, I was told I couldn’t and it wouldn’t be wise for me to be in the room, I begged and demanded to be brought to her. They took me into the examination room and that’s when I heard her screaming, there was blood everywhere from them checking her, her stats were on the screen above and there was flashing and lots of noise and concerned talking. I broke down and couldn’t breathe so was taken out again after a while. At around 5/5:15 in the morning someone came to me and said they know it’s her heart but they don’t know what’s wrong and she isn’t doing well. They told me to ring my partner and tell him to get there as quick as he could. It was now his birthday, I rang him at half five to tell him something was wrong with her heart and to get there quickly. It was the afternoon before we found out what was wrong.

She doesn’t go to nursery yet, her birthday falls after the cut off so will be going next year. Last year we got her into a special daycare ran by a paediatric consultant nurse, it’s been brilliant, she gets to interact with other children and even sees some with tubes so feels she can relate. She loves going and has so much fun and has come on so much since starting. She was there today and comes home so happy. She only goes twice a week because that’s all we can really afford right now. But it’s so good for her.


Is she on tacrolimus and prednisolone? My son had a liver transplant and these are his main drugs.

She is on tacrolimus with a dose that can vary dependant on blood results. She was on cyclosporine but it didn’t agree with her (I may sound awful but I’m glad it didn’t work for her as it makes anyone who takes it very hairy, just the short time she was on it she had gained a lot of hair, we already have hairy genes so not good lol) she took to tacrolimus like a duck to water.



Hopefully these answers aren’t too long, I think I get carried away remembering things.

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Insulater · 19/07/2018 18:03

Thank you so much for sharing yours and hers incredible journey. I have tears in my eyes reading that and a chill in my spine. My daughter was born in difficult circumstances and taken straight away after birth. My husband didn’t make it on time as well. So I was very scared on my own. I understand too well when your baby is taken away from you and no one tells you anything. Your daughter can only grow up to be a courageous girl because she has a courageous mother like you to look up to.

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QuackPorridgeBacon · 19/07/2018 18:10

Insulater Thank you. It’s scary just sitting not knowing what to do or what’s happening. She is very courageous, the girl has no fear lol she tries to climb everything and is constantly growing herself around. Learning to walk has been exciting and terrifying lol she just wants to run before she’s fully steady just walking. Nothing phases her lol

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