Aortic Root expansion in 13 year old

[thisisme]

Hi all,

My 13 year old daughter is being watched for Marfan's syndrome (family history, father with dissecting aortic aneurysm). She has some Marfan's characteristics and, most importantly, one of the measurements of her aortic root was at the 99th percentile of where it should be.

She has had not restrictions placed on her, but recently she began on a cheering squad as a base person, meaning she has to repeatedly lift another member of the team (along with the help of two other girls). They lift the girl way up over their heads and do stuff (you've seen these moves, I'm sure). They practice 7 hours a week, and during these practices they may do this lift 50 or more times.

The cardiologist has stated she should not be doing this, it is too much strain on the aorta and we need to preserve it's integrity, it would be a shame for her to have to have it repaired before her child bearing years.

I guess the doctor is right and I must follow his advice, but my heart's broken for her and I can't stand to tell her.

What do you all think, is this being too conservative? She's only 13!!!

 

[Nancy]

Hi and welcome-

Your daughter is so young for such big problems. But it sounds as if she is getting very good advice from her cardiologist. I am sure you will have lots of answers from those on the site who have Marfan's or Marfan-like symptoms, some of whom have children with some of the characteristics.

We also have a goodly number of folks who, by a BIG miracle, have survived an aortic dissection. I'm quite sure these people will feel that the cardiologist is right on. And I bet they feel you should have your daughter stop lifting with all due speed.

It won't be accepted easily by your daughter. She'll be angry with you and at the situation. But you have to protect her health and life.

I was a cheerleader in highschool, many, many years ago. I actually broke my back during a maneuver. In those days, they didn't want to x-ray young women, so it was never diagnosed correctly at the time. I just knew I couldn't walk and the doctor then thought it was a severe sprain. It wasn't until I got older and had many problems with my back, that I finally found out what had happened. I have now learned to cope very well with the problem and is wasn't a severe break.

Of course, this isn't anyways near the seriousness of your daughter's potential problems, but I remember having to leave the squad. I was so upset. It's something you work very hard at achieving and Bam! it's over.

But health comes first. Without that life is terribly difficult.

This is a wonderful group of people and you will find excellent support here.

Take care.

 

[bvdr]

I'm sorry your daughter is having problems. As hard as it is, it is just too much risk to go against her cardio's advice. When you think of how you would feel if you let her and something happened......

 

[Karlynn]

First of all, welcome to our site, I hope you continue to "hang out" with us.

Your daughter has had a tough deck of cards dealt to her at 13. However, I would agree with the others, that the doctor gave wise advice. This will be unhappy news for a 13-year-old, especially since all teenagers think they are invincible. But it also sounds like your mother's instincts are also right on. You don't want the doctor's advice to be correct, but you know it is.

Here is a previous thread that has an article on weight lifting, aortic disection and men. It doesn't apply totally, but remember that an adult male has much more fully developed muscles than a teenage girl and is better able to lift heavier weights. A 13 year old's underdeveloped muscles only creates more strain on the body. http://valvereplacement.com/forums/showthread.php?s=&threadid=5518&highlight=weight+lifting

Hopefully there will be someway she can still participate without risking the things you are concerned about.

Best wishes!
Karlynn

 

[ALCapshaw2]

Hello 'thisisme',

I hope you read all of the reference thred Karlynn included in her response.

The VERY IMPORTANT point you and your daughter need to know is that when an aneurysm ruptures, there is a VERY HIGH RISK of
SUDDEN DEATH, even if there were no prior symptoms. John Ritter's demise is a perfect example of this phenomen.

I'm sure your daughter will be VERY DISSAPOINTED and ANGRY. Hopefully she will learn about her condition and what she needs to preserve her life. Life is not always fair.

'AL'

 

[medtronic of borg]

teens

teens

my thought is let her for a short while and then have the coach move her postion cheering only from the floor without lifting. End of story!
Med

 

[thisisme]

Hi all and thank you for all your thoughtful replies.

Yes, I know she needs to be restricted from this activity, and I've taken care of that. Thank you all for putting yourselves behind me and giving me a big shove.

Guess I've got a bit of denial going on here. It's been a tough year, with my husband nearly dying from a dissecting aortic aneurysm last March. His most serious restriction is lifting, because of the pressure heavy lifting places on the aortic root. So, I guess I shouldnt' be surprised that's also to be my daughter's most serious restriction. She can run a marathon but can't lift a refrigerator!!!

I have an inner dialogue that keeps telling me that the fact that one bitty measurement of her aortic root at 99% of normal is just "normal" for her and doesn't mean anything. But, when I intelligently put that together with her family history and all the weird things she can do with her joints, I know that there could be something there. And, if there is something there, I feel it's my responsibility to protect her aorta for her so that she can live her life to the fullest without any complcations.

I spoke with her coaches and they were really wonderful, they immediately moved her to the back position on the base, where she'll provide balance for the flyer and catch the flyer but not lift her. Also, each week they award silver pom-poms to the girl they feel has put most of her heart into the work that week. This week, they awarded it to my daughter because she has so mastered her back flips. But, I know it was more than the back flips they were thinking of. I wish all coaches could be this compassionate, it was really a wonderful uplifting moment for a girl who was at the moment a bit disappointed in life.

Thank you all for your help and I look forward to getting educated by others here who have experience with this type of thing. I hope you are all healthy today.

 

[Karlynn]

I don't envy your position. I've said before that I'm very glad that the health issues I deal with are my own and not my children's. In a mother's mind, having a child with health issues is so much harder than having them yourself.

I'm so glad her cheerleading is going to work out for her. Bless those coaches for stepping up to the plate with you.

With all your worries, I wish you peace this holiday season.

Karlynn