Tuesday, April 15, 2014

Eleven things you shouldn't or should say to a parent with a child with VACTERL

One thing is for certain. VACTERL is rare. Its becoming more common , but still indeed is rare.
With statistics like 1 in 250,000 live births , give or take ( its truly impossible to know) , of children being born with multiple birth defects. You may go through your entire life not knowing a child like a our Maggie girl.  Heck, most doctors will go their entire career not ever laying eyes on a child with VACTERL.  What is VACTERL you say?   In a nut shell its a group of random birth defects. That truly is saying it in a nut shell. Yet , VACTERL, is so much more.  Many of you will meet a child born with a heart defect, or a spinal issue, or kidney problem. Many will never meet a child with spinal issues, heart issues. anal , kidney and limb issues, or even tracheal or esophageal issues all rolled up into one fancy little package.
 But what if you do meet a family with a child like our Maggie? Who was born with the V, A, C, R and L of VACTERL( by the way the word is an acroynm that stands for vertebral, anal, cardiac, tracheal, esophageal, renal and limb.. phew that's a mouthful, right? )
I know we've ran the gamut of questions, well meaning advice and sayings the past 7 years.  I think we've just about heard it all. Sometimes we don't mind answering, or talking about it. Sometimes we do.  Sometimes we'd much rather not hear cliche's about how we must of been so special as to have a child with something that no one has really heard of. Sometimes we honestly much not rather hear all the well meaning advice, though we know how well meaning it maybe, because sometimes we just can't fix something like we wish we could.  Sometimes we just hear words that should have never come out of another person's mouth to begin with.

 So here are 11 things I can think of that I'm sure many  families with VACTERL, and even for those with children born with any type of special need can agree upon.

1.  Don't say :  Did you know before she/he was born? 

I will tell you , most families have no clue. Though medical technology is catching up where doctors can pick up major defects. It still has a ways to go. Not to mention since most doctors and sonographers have never seen VACTERL , they miss it and just have no idea of what they are looking at.  That was our case. The signs were there, just no one had any idea.  Not to mention just asking that question makes a parent feel like if they knew they would have been able to change the outcome. I know in our experience we had some people believe that we knew and kept it from everyone. Not the case at all.  If a parent is fortunate enough to know , they are fortunate as they have time to prepare. 

Do say:  How is your child doing today?

2.  Do not say :  You'd never know she/he has VACTERL. Just look at how great she/he looks! 

Though we know these are well meaning words. Know that they hurt.  Our children can go through as little as three operations to over hundreds of operations throughout their lifetime.  They all go through so many procedures that we as parents literally lose count and can't even write them all down on paper. We literally have to keep a file of their medical history in our homes and make resume's to give to new doctors that we constantly add to their list.  Children with VACTERL will go through more operations than the average human being ever will in their first few years of life. Our daughter, to date, has had 15 major operations. This does not count being put under for MRI's, cystoscopies, scopes, and other procedures she has had.   
As well meaning as it is, and as much as we want our VACTERL children to be and look normal. The words seem to cut like a knife through the heart. VACTERL parents know all of the hours, days, weeks and years spent in hospitals. We literally adopt hospital staff as our family we spend so much time in them.  We literally know how much our children have suffered going through surgeries that would make most adults cringe.  We know of the scars under their clothes that have proved this. Not to mention we know of all of the little kid accidents , or sickness they've had that is just part of every day child life on top of their VACTERL.   We as parents work hard at keeping them looking well. We know. 

Do say : She/He is adorable. Or even better : She /He is amazing!!

3.  Don't say : "God doesn't give you anything you can't handle. " " Everything happens for a reason."  

The worst thing you can do is use a cliche.  Unless you're a parent with VACTERL you truly have no idea what it is like. Here you have a child with  something no one  knows nothing about. Most doctors have never even heard of it. As a parent you are responsible for learning this 'monster' and teaching and training medical staff and the public. VACTERL is  not common like Autism, or Cerebral Palsy or any others you may have heard of. So as soon as you open your mouth and say the word VACTERL most people will look at you like you have 100 heads and are spitting out fire.  
Saying this minimizes how the parents feel, as if  only they should be handling this, and no one else needs to.  While its very tempting to put a positive spin on something that the family is going through , its just not the best. Many parents are still sifting through all of the chaos that it can cause because they don't know everything they are dealing with. Even after that baby turns into a child, and even into  a young adult, the family still has to deal with VACTERL. It never goes away.  Over time we learn to live our new normal, but its not best to instruct us into doing so. 

Do say : I am hear to talk to or a shoulder to lean on if you need me. 

4.  Don't say :  I know what your going through. " My friend's cousin's neighbor has a son with  (  insert a birth defect ) . 

Though again well meaning. Its not the same as actually experiencing it first hand.  Not to mention our children are born with several birth defects.  So its all a vicious cycle for them. One things causes another thing , causes another thing , and it goes round and round.  Its human nature to try and want to be sympathetic. We all want to relate to one another and have that one right thing to say to make everything all better. In fact , it does the opposite because you aren't living their life and going through what they are going through.  Its one thing to say " My niece was born with spina bifida" , but don't include that with," I know what your going through." Unless you  have a child born with VACTERL , you truly don't. 

Do say :  " Wow, I don't know what you are going through right now but if you want to talk about it I'm here. 

5. Don't say : " Do you have other children with VACTERL or health problems?" 

Most families will have only one child with VACTERL Association.  It is extremely rare to have two children with VACTERL. On very, very rare occasions VACTERL is passed down to other children or family members.  There is only one VACTERL that is hereditary and that is VACTERL - H ( the H stands for hydrocephalus).    Sometimes some family members might have had one issue . For instance my 2nd daughter was born with kidney reflux. It was very mild as well as being tongue tied, and had seizures from the time she was 9 months old to the age of 3( my 2nd is going to be 15 yrs old) . Maggie was born with kidney reflux but her issues were far more severe and she was also born tongue tied on top of everything and, again her tongue tie was more severe.  Thankfully Maggie has not had seizures.  Other then that my other children are truly completely healthy.  I know a family who has 8 children and out of her eight, only one was born with VACTERL. 

Do say : Do you have other children? 
You would say this of a typical family. Why not a family with a  child with VACTERL? 

6.   Don't say : Don't you think you've put her/him through enough surgeries/treatments? Why try to change him or her?  Won't they just grow out of it? 

I think if I charged people a dime for each time we've heard one of those statements I think I'd be a very rich mom.  I cannot tell you how many times people have asked me if Maggie was going to grow out of something?  The last two years Maggie has  went through major, major reconstructive  surgery that will leave her having to catheterize for the rest of her life and have enemas. She will always have to, no matter how much we'd love for her to 'grow out of it'. She will never grow out of her VACTERL. There will always be something that crops up , even when we get something else ' taken care of' . For instance we learned last year she has something called Left Ventricle Non Compaction Cardiomyopathy ( heart defect). We had no idea until last year that she even had this though we saw several cardiologists here at home. Going to Cincinnati, we were in the right place at the right time. Honestly,  with VACTERL its just always something.  And we don't love to sit in doctors offices, we don't like to spend our days away from our other children in hospitals, or traveling to other states to go to other hospitals. We don't live our lives putting our child through another surgery when we'd much rather watch them go outside and play and when we just want to live life.   Some surgeries our children face can be elective and its up to us as their parent to make a decision if its going to 'change' our child.  Each family has to make their own decision as to what is right for them. So please don't try and make those decisions for them or guilt them into making a different decision that may not be right for the child or family. 

Do say:  I've heard of ,or been doing research on a particular surgery. If you'd like I can share that info with you. Or say nothing at all.

7. Don't say:  Why don't you try this treatment, new diet etc?  This might fix things. 

As much as we'd love for a certain diet or new treatment that is holistic in nature to fix things. Sadly there isn't. I am very pro holistic when the time calls for it, but I know it will never fix things for Maggie. I know if she gets a sore throat we can try apple cider vinegar and some honey to see if it does the trick, but we could never use something totally holistic with her should she get a urinary tract infection (though we can use something holistic to try and prevent them).   What works for one child may never work for the next. Children born with VACTERL  are as unique as a snowflake. No two children are the same. Trust me , most parents with children with VACTERL are researching the right place, and the right doctor to take their child to give them the best outcome in life.  No two children get the same type of treatment when it comes to their doctors either. They were born with birth defects , so they are not the average child or adult when it comes to their health. 

Do Say:  What kind of treatment plan or surgeries do they have that will help? 

 Don't offer unsolicited advice unless you and the parent are talking about the treatment plan and/or surgeries. 

8. Don't say:  Its such a burden to have to drive my kids to soccer practice, or take them to gymnastics or ballet.  

What we wouldn't give for our VACTERL kids to always be able to do everyday things.  Our children with kidney, spinal, heart ,  and tracheal esophageal problems cannot play contact sports, or sports that over exert  them.  Kidney kids cannot take the chance of having their kidneys harmed by the smack of a soccer ball, or the tackle of another child in football.  Heart children cannot over exert themselves. Our children are limited in the things that they can do depending on the defects they were born with. Though we as parents treat them as they can do anything they put their mind to. We also know they truly have limitations. I know Maggie cannot play soccer, she  may never be a gymnast due to her limitations with her spine.  But we don't take those things for granted , not at all. We would love to see our kids soar even more than they already do.  What many of us wouldn't give to be able to take our children out to these events and watch them play.  We dream.

Do say :  Can I  offer to help drive you to a doctors appointment or therapy today? Or how about a regular play date?
 We always appreciate the help having someone drive us to an appointment. Sometimes its just great to have someone along for them.  Our kids love to play too and have fun.

9. Don't say : You should really make time for yourself.  You need to relax. 

Guess what? Our primary job is to take care of our children. We don't get a break. Very few are lucky to get respite services. It wasn't until Maggie was about 5 that my husband and I literally had our first break.  We weren't fortunate enough to have someone offer to watch Maggie for a little bit, and respite services were not available in our area. Parents do need the break to re energize  themselves, but we cannot just walk out the door. Its not as simple as hiring a baby sitter as many people are very scared to care for a child with multiple medical problems if they are not familiar with doing so. 
Not to mention the first few years  seem like a whirlwind until we learn to live with our new normal.  So take the time to help these families. Don't make empty promises. Don't tell them to ask you when they need help. Give them the help that they need during that time because they will never ask you. If you tell them to let you know , all it does is give you a way out not to help.  Be direct, even if its to watch the baby for an hour so mom can get some rest.  Or take other siblings out to play, or just make a dinner and bring it over.  Step up and be there. Even if you don't know what to say.   Just say " You guys look tired. I will come over today and watch the baby for an hour so you can rest." Or I plan to go to the park today with my kids. I'll be over in a bit to pick your children up so they can go along with us.   And actually do it.   Parents of special needs children go on one speed and never stop. We don't take the time to stop for ourselves because we feel we are in charge of caring for this special little person who needs us more than ever. We are their caregiver from the moment we bring them home. So we have very little to no time to think about ourselves.

Do say : " I can come over tomorrow and help clean."" I plan on making a dinner for you tomorrow , what is your favorite food?""  I can take your 'other children' out for a play date or out to the park."" I can watch the baby or your other child so you can get some rest."

  Think of it, we probably need it. 

10. Don't say:  How's the marriage going? 

One thing is for certain is that learning to live with a child with VACTERL or any child with special needs is that it can be very stressful.  As you learn to live your new normal you find that that some parents are not able to handle the stresses that come with it. There could have been problems with the marriage before hand. Or new problems may emerge when the child becomes the center of attention. Statistics show that 80% of marriages of families with children with special needs fail. That's a sad statistic. Whether its any more or any less with families with VACTERL , its not known. What is known is that a marriage can only stand if its strong. And it can't be strong without a little help. 

Do say : I would like  to babysit so you both can go out and have some time together? I'll be over in an hour. 

Its hard enough to navigate the confusing world of VACTERL. Just a little less stress, even if its for a little while is like a gift in itself. 

11.  Don't say : What caused the VACTERL? 

Guess what? If we could answer that question we gladly would. No one knows. Though there is a study right now that a doctor that had currently worked with the NIH started, not much is still showing up as far as what could be or what did cause it in the first place. What information we do know is that its not hereditary, its not genetic ( in most cases) and it was absolutely nothing we did when we were pregnant.  As parents with children with VACTERL we try to figure it out, sometimes we feel guilty that it could have been something we ate, something we didn't eat, a medicine we could have taken, a health problem we had, or something in the water or environment.  In few cases VACTERL could have been caused, such as women with diabetes tend to have more of an occurrence, or someone may have taken a medication that could have caused VACTERL , but  for the vast majority of parents, its actually random and had nothing to do with any of those reasons.   So we will never be able to give you an answer until its actually figured out. If it will be at all. 

What can you say?  Nothing. 
Even if you feel the need to ask. Don't.  Parents already feel guilty and they are always trying to search for why, since there is no answer to why.  The question can really begin to make the parent feel guilt. Something they don't need on top of everything else. 

So there you have it folks. I'm sure there is more that can be added to this list, but this is a starter.  These are things I can think of off of the top of my head. Now its up to the public to read, learn and listen.  
Know that if you have the honor to meet or know of a family with a child with VACTERL Association. Everyone can benefit. Know that there are the right things to say and the not  so right things to say.  The most important thing of all is that you can be there for them when they need it the most.

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