Back to school with CHD kids

One of our topics this week was getting CHD kids ready or back to school.  With such wonderful responses and messages we though it would make a great stand alone entry for our blog for everyone’s benefit.  Here are some of the fantastic advise we received from some of our Whole Hearts family.

Whole Hearts mom Jennifer Howard gave us this great insight:

“Because it is time for back to school, many parents are asking questions as their kids go off to school and I keep replying with my praise of MedicAlert, I thought I would give a quick rundown of the reasons I like it.

All of my son’s info is in one place. His pertinent information is printed on the bracelet he wears, including his ID# that Emergency Medical Response (in case of an emergency) can use to look up ALL of his medical info I have entered into MedicAlert. It is easy to update his information online and if I ever run into trouble entering something, their customer service is GREAT! An example of this is his aortic valve replacement. It is actually a pulmonary valve (he was only the 5th child to receive this type of valve in the aortic position), so entering the part # pulls up “pulmonary valve” on the site. I contacted customer service and they held a special medical review and made the change so the information on his record was correct.

Below are the tabs that are on Landon’s MedicAlert Health Record. You can update it online and can PRINT the entire record to give to teachers or other care providers.

Personal Information
Emergency Contacts
Medical Providers
Any necessary documents
Devices (including part #s and serial #s)
General Info (religion, language, insurance info and blood type)”


Another one of our Whole Heart moms Lindsey Morrison sent us a great message we wanted to share on the topic of going back to school.  Lindsey says:

” Here is a letter that I have found very useful when it has come to my two CHD children. The teachers and staff have expressed how thankful they are to have gotten the letter and how much it helps. Would you please share it with the other WH familes. They can save it to their computers and insert their child’s name and other information.




Dear teachers name, and concerned staff,

I wanted to first say hello. (Child Name) is excited to be in (Grade in school) and hopefully will be a perfect addition to your class. I wanted to let you know a little about (Childs name). I will send this to the school nurse, Gym teacher, Principal and any other relevant staff as well, so I apologize if it was passed on but as you will see it is rather important that everyone dealing with (Childs name) is aware of his/her special circumstances.

(Child Name) was born with a Congenital Heart Defect (CHD) called a (your Childs CHD and brief medical history, any sergeries, hospitalizations or other info )

We have been enjoying the time since the last surgery and do not expect any procedures in the near future, but with a condition this serious the future is never crystal clear. He/She will see her cardiologist in (next appt date) and if anything is turned up, we will of course let you know if it will affect her school time.

Just to let you know some tidbits about Him/her and some warning signs and things to watch for. (Childs Name) oxygen levels are sometimes slightly lower than that of other kids. The weather can affect heat/cold regulation so there needs to be the ability to rest when she needs to and hydrate as much as possible during physical activity, this is very important. I will make sure she is appropriately dressed for the weather.

Physically he/she is to be treated as normal as possible. He/She is not allowed hard contact sports or any kicking, hitting, direct ball contact etc in the chest. Running is fine and most physical activity is ok as long as she can rest if she needs it or get a drink of water. Things to watch for: Nostrils flaring/rapid irregular breathing, bloodshot eyes or rolling of the eyes, extreme sweating, redness of the face and body that doesn’t go away with shade/rest, blueness of the lips or hands or vomiting. Any signs of an adult heart attack, the dizziness, fainting, pain in the arms, etc. also would of course be signs of emergency.

As I mentioned, I will have spoken with all the staff that deal with (Childs Name), and obviously if she is in distress of any kind, 911 should be called before me, but if he’s/she’s just “normal” sick, I can be called.

Please forgive me if this comes across as a lot of information. We wanted to provide it so everyone is on the same page in regards to (childs name) care. There really should be minimal impact the heart defect has on day to day life at school, but we felt very strongly that everyone who is in a caretaking role be made aware of this issue.

We are all looking forward to a fun school year. Thank you so much for taking the time to read this, and if there are any questions you have, I would be more than happy to answer them for you. Thank you again.


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