Life after Transplant

Words Have Impact: What to say (and not say) to the parent of a transplant recipient

The words that we speak have an impact; often more so than we know. Off-handed comments spoken with the intention of being helpful are often hurtful, frustrating or maddening. It is impossible to know what someone is going through, so a comment that may be sloughed off as simple ignorance one day could have a profoundly negative impact on another.

Most of these comments wouldn’t bother me today. Laura is healthy and thriving, napping peacefully in the other room. Right after transplant, however, when the wounds were still fresh and the trauma very real to us, these comments left a rather sour taste in our mouths.

This isn’t to say that I am not annoyed by these comments now (I definitely still am…) but they aren’t likely to trigger any substantial anxiety/anger/other negative emotion.  Often, simple tweaks in phrasing can completely change the perception of a comment from ignorant and rude to inquisitive and caring.

Here is my current list of comments which you should NOT say to the parent of a transplant recipient/medical parent/parent of a chronically ill child along with simple changes which completely alter the perception of the comments.


Oh good, she’s fixed! 

No, she’s not. I truly wish that transplant was a cure but it simply isn’t. Laura receives life-sustaining medication every 12 hours and will continue to do so for the rest of her life. If she were to stop taking her medications, her body would attack her heart and she would reject it. Even if she takes her medications diligently forever, her body will eventually reject the heart and it will fail. In the interim, those same medications which are keeping her alive are also harming her. They are hurting her kidneys and her liver, they cause her skin to become cancerous when attacked by UV rays, they cause her to become ill quickly and regain health slowly, they cause GI problems, and the list goes on.

So no, Laura is not fixed. She is alive and thriving at the moment but she is not cured. She has congenital heart disease which is being treated with a heart transplant.

If you are curious, why not ask: Is this a permanent fix? 

Phrasing these things as questions leave the conversation open, whereas sealed statements create an awkward attempt to segue into the reality of her condition (as listed above).


I relate completely with what you went through… One time, I had to take my child to the hospital because they (broke their leg, got bronchitis, had an asthma attack, etc)…

Hear me out on this: I understand that it is difficult to see your child suffer, whether that be with a cold, a broken limb or heart failure. Just because you have not necessarily seen the degree of sickness that we have does not make you any less of a parent or any less anxious about your child being ill.

That being said, you do NOT relate to what we went through – and I am so glad. I do not wish our journey on anyone. We were able to make it through with the support of our friends and family and with the strength of God guiding us through each step of the way. We didn’t have a choice. We were not brave or special, we simply kept on going because there was no other choice.

We belong to a special club of parents who have witnessed the death and resuscitation of their child. For 127 minutes, Laura was dead. We witnessed 7 of those minutes and that was plenty. We woke up every day excited to see what Laura had accomplished and how hard she was fighting. We also woke up each morning knowing that it could be the last that we had with her. Unless you have had that experience, please do not tell me that you relate because you don’t, and as I said before, I am so very glad that you can’t relate.

Instead, try saying: I can’t imagine how hard that must have been, it was hard enough when I had to bring my child to the hospital because they (broke their leg, got bronchitis, had an asthma attack, etc)…

Again, you get your point across and relate it back to a personal story and yet you are not pretending to understand the trauma that our family endured. When we were in the thick of it and right after we got home, this comment was one of the most frustrating that we heard.


Oh… she’s not sitting/standing/walking yet? My child did that at ______ months. 

Every child is different. Whether they are healthy or sick, they all develop differently and hit their milestones at different times and in different ways. I’m not sure that it is helpful to point out what you perceive to be “delays” to a parent who has seen their child fight for their life.

Laura had been home for less than a month when I started hearing this – she had literally been able to sit up for less than 2 months in her entire life, before that she was lying on her back in a hospital bed for 5 months – milestones were just not relevant.

Instead, try turning the whole thing into a positive remark: Wow! Look how well she is doing considering everything that she endured! 


Don’t worry about how much she’s drinking, she’ll drink when she’s thirsty. 

This one goes hand in hand with “It’s not going to matter in the long run if she finishes that.”

This comment is meant to be caring and helpful and, although I do understand that, it is still frustrating. Clearly, if you are making this comment you don’t know my child – why are you going out of your way to tell me how to care for her?

Here’s the reality: Laura’s medications are incredibly harmful to her kidneys. In order to relieve some of this damage, she drinks a TON of fluids every day to help flush the medication from her kidneys, limiting the amount of damage and hopefully steering her away from needing dialysis or a kidney transplant later in life.

I do understand that she drinks an abnormal amount of fluid, so instead, try asking: Do you mind me asking why she has to drink so much? 

Like I said earlier, if you ask a question, I am more than happy to answer (as is any of the parents that I know in a similar situation) but if we are already having a difficult day, we aren’t going to be interested in your misguided “advice.”


Oh, they’re not sick, it’s just a runny nose.

There is no such thing as “just a runny nose.” If you’re kid has a runny nose, they are either experiencing allergies or fighting something off. Whatever bug they are fighting may not be affecting them but it may be very dangerous for Laura.

For her safety, we keep her away from any child who is ill – they will touch everything and contaminate it.

If your child is sick, I’d be really happy to hear: We’d better cancel, I think they’re fighting something off. 

Even if it means cancelling plans that we were really looking forward to – Laura’s health has to come first.


If she ate more dirt she’d be able to build her immune system. 

The biggest issue with this is that it shows a complete lack of understanding of the fact that we are purposefully suppressing Laura’s immune system.

Laura’s immune system is not weak because of what she endured in hospital, it is weakened because we are suppressing it using medication. If Laura’s immune cells were to get too strong, they would find and begin attacking her heart because it is not hers. Her heart is a foreign body and her antibodies would fight it just as they would any other foreign substance.

Again, the big issue here is that I don’t need other people (other than Laura’s medical team…) telling me how to care for my child – I received a LOT of training in hospital so that I would know the full reality of Laura’s condition so that when people offered her a mud pie I could say “no thanks, pseudomonas is not on tonight’s menu.”

Instead, ask the question: Can you remind me why her immune system is suppressed?


So a baby died to save her life? 

This is hurtful and incorrect. I think this comes from a misunderstanding of the whole transplant process.

A baby died. It was tragic and horrific and the worst thing that a family can endure. After that baby died (was declared brain-dead after MANY tests), the family made the selfless decision to donate their organs so that others may live.

This comment worries me more for Laura’s sake than my own. The last thing she needs to hear when she is old enough to understand is that a baby died so that she could live. A baby died and it was very sad but that death would have occurred whether or not they donated their organs.

My sincere hope is that by donating their baby’s organs, the family was able to find even the faintest bit of peace in knowing that their decision would allow other babies the chance to live.

Instead, we’d love to hear: It’s amazing that a family donated their child’s organs and helped to save Laura’s life! 


 

I am always happy to answer people’s questions about Laura’s condition. Most people will never have experienced anything like what Laura went through and it is normal to be curious. It is normal to have very little understanding because it is not that often that you come across a kid like her.

The frustration comes when people offer advice when they don’t fully understand Laura’s situation.

On a good day, I don’t think that any of these comments would cause a major disturbance with the parents of a kid like Laura. On a bad day though, when perhaps they have hit a road block on their journey, a little bit of forethought in what you are saying can go a long way.

 

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