Think before you speak

Things you should not say to parents of a child with a heart condition

#classonglass #hlhs #chdawareness #heartmums #congenitalheartdisease



It amazes me in this day and age that people still come out with the things they say before actually thinking first. I don't even think they realise that what they have said will have any sort of impact on the person they have said it to. Well let me enlighten you IT DOES!!!!!


Being a heart mum I was asked all sorts of weird and wonderful things concerning Lees heart condition, It astounded me that people could be so ignorant and down right rude. Bit harsh I hear you say. Most of what I'm about to say in this blog was asked by family members and friends.....not all but most.


I call these people ignorant simply for the fact they could of read up on Lees heart condition and put a little bit of work in first to educate themselves and realise that some questions they have asked are beyond inappropriate.


Now not all the questions I'm about to write about were asked to me, I am a member of a very special heart group called Little hearts matter. I asked the members of this group to share with me some of the things that people have said to them in the past or sadly recently, the results are mind boggling to me, I just don't understand how some people feel that what they have asked is at all appropriate.


This blog post is to point out just how upsetting these questions can be and if by chance you are reading this and know of someone with a child with a heart condition then maybe this will help you with the things not to say!!!


Pregnancy


For expecting mothers pregnancy should be a special time. Sadly for those mum's that have been told that their unborn baby has a heart condition the pregnancy period is filled with worry, stress and uncertainty. Hormones are flying all over the place as it is, but being told this news it moves everything to a whole new level. Mothers are left feeling guilty because they think it may of been something that they have done during pregnancy and now they worry about the future.



"Have you seen a doctor about it?"


Now this questions baffles me a little, You have just told someone that your unborn child has a heart condition and then they ask you this. I do know that mum's have some superpowers but looking through your belly and into your unborn babies heart is definitely not one of them. We know they have a heart condition because funnily enough we were told by....guess what....a doctor. So please use just a little bit of brain power here people and realise we are telling you something that we have been told.


"Is it because you have done something during your pregnancy?"


No, No, No just NO!!!!! Most heart conditions happen for no reason at all. Being a heart mum myself, I already blamed myself, thinking I must of done something to cause this......but in truth....I never. So to ask this question to an expecting mother who will already be blaming herself is like kicking someone who is already down.


"When they are born they might not need surgery"


When a heart condition is picked up during pregnancy, the expecting parents will have numerous doctors appointments and things will be put in place for when the little one arrives. The parents will be well informed of expectant surgery and other many appointments that will happen after birth. The half heart, hole or what ever the condition may be will not miraculously grow or heal.



Heart baby or child


Bringing a new born home can be quite a worrying time for first time mothers but even more so if they have an open heart surgery looming in the future. Other mum's like my self don't get the chance of going home until the surgery is over, It was three weeks before I left the hospital with my son, others can be in hospital for months.


"Are they fixed now?"


This question never fails to shock me, My son Lee was born with only half a heart, Lee has had three open heart surgeries and still he only has half a heart.........Is he fixed now???? If by that you mean have they rerouted all the structures in his heart just so he can live then yes....yes hes fixed....if you mean has he got a new heart, then no....no he does not. You cannot fix half a heart you can only operate on it to save his life. People should never ask this question to any heart parent its wrong on so many levels.


"Its amazing how technology has moved forward so everything will work out"


This is more a statement than a question, but non the less hurtful. We as parents are well aware that everything has improved over the years and we are extremely grateful that it has, we do not need these things pointed out to us. To say everything will work out sadly can sometimes not be the case, so please never say this to anyone with a child that has a heart condition and is due to have more surgery.


"They are a funny colour."


I would be extremely rich if I had a pound for every time I was told this. I'm not sure what people expect a baby to look like that has a heart condition. Personally I would never dream of saying this, I would know that they will not look as pink as other babies with a healthy heart, and even if the thought crossed my mind, it would never cross my lips



"I have a friend who's aunt, cousin, uncle, friend or sister has a heart condition and they are fine now"


We as parents to a heart child DO NOT CARE!!!! If the person you are talking about does not have the same heart condition as their child then please do not say things like this, and even if they did....every single child is different, what worked out for one may not for another. Maybe you are trying to give them hope....but trust me when I tell you this you are doing the opposite. We are only concerned for our own child.


"At least its straight forward this time, they sailed through the other operations, they will be fine this time."


Unless you have walked in my shoes or any other parent going through the same thing as I have then this statement is so hurtful. ALL open heart surgeries carry a risk, please for a moment put on my shoes, how exactly would you feel knowing that your child is going for open heart surgery....scary thought eh???? but your lucky, your child probably is not going to have to go through that....... the reason I know this.....you would never of said the above. Parents that know their child will have more operations in the future do not want to hear those things, so please never say them.


"How long do you think he will live?"


Shocking isn't it that someone would actually ask this question. Shocking as it is, they do. I myself was asked this. I shouldn't need to tell you just how inappropriate this question is, I mean what actually goes through that persons head for them to think this is perfectly fine to ask. There really is not any more I can say on this question, I can never understand people at the best of times but dear me!!!!!!! If you have ever said this then shame on you!!!!


Now for my ultimate favorite......note the sarcasm


"Cant they just give him a heart transplant?"


This is one of those questions that absolutely without a doubt boils my blood!!!!! This is my number one for me personally that hurts me the most. Please Please Please never ever say this to anyone!!!!! Our children have fought so so very hard just to be here, the surgeons have worked on our child's own heart just to keep them alive.


Even the word heart transplant scares life out of me and will most heart parents. Heart transplants are the very last resort, putting in another heart that belonged to someone that has sadly passed away in to your child is beyond frightening. Its a 50/50 chance if the body rejects it or not and even then they will be on anti rejection tablets for life to hopefully stop that happening in the future.


This question should never be asked period!!!!!






Child passes away


Sadly for some heart parents, their child passes away. Either during surgery or with the heart condition they have. This is an extremely difficult time for the parents and close family connected to the child. Unfortunately for them they are still not safe from the stupid ignorant things people may say.





"I did not realise their heart was that bad."


The reason you never knew the child's heart was so bad is because you either never asked about the child or you never attempted to educate yourself on finding out about his/her condition.

Yet you think its perfectly justified by saying that statement to the parents of this child. Again I am shocked that any one would say such a thing to a parent who has just lost their child. What part of them thinks this is acceptable????


"Time is a great healer."


I personally hate this saying, and people who are grieving do not want to be told this. There is no time line on grief and there is no right or wrong way to grieve. I also want to say "Its ok not to be ok" Its part of the grieving process, you miss someone you love then go ahead and show it, talk to people about them, cry about them, laugh about them and share memories.


People should never try to avoid the subject through fear you will upset them, trust me they have not forgotten, but will become hurt if you say something like " it will take your mind of it" What ever you do in life your mind is always with you, you cannot escape something that's going around your own head and why would you want to, they part of your life.






What to say


If a friend or family has been given the news that their unborn or newly born baby has a heart condition find out about the condition yourself or better still ask them about it.


Ask how they are and if there is anything that you can do for them, even sitting listening to them will help them, sometimes all people need is someone to talk to about how they are feeling.


A little bit of compassion goes a long way.





Please take a moment to read the 'Giving back' section on my website



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