BACK TO SCHOOL - A Letter to the Teachers

Our daughter was a bubble-wrap child. For years, we kept her away from shopping malls, crowded indoor play areas and other drooling, sneezing, virus-and-bacteria-spreading kids. You can imagine how our social life looked like.

By the time she was three years old we started getting ready for both her third open heart surgery (Fontan) and soon after, her entering the society. We planned her surgery in a way it would not interfere much with the start of a school year. It was August 2021. She joined her peers in a classroom less than a month later.

"Most important thing to know is:
she will not just drop dead."

That was the summary of me asking her cardiologist what I should inform the school about. We talked long and into every detail, but at the end - yes, the conclusion of what is most important to communicate is what it is: nothing very serious will just happen out of the blue. Teachers tend to get afraid of what they do not know. And a serious congenital heart disease is something many people know nothing, or very little about. I felt like I should make them aware.

Luckily, others thought of it before me and I found a draft of A Letter to Teachers online, but it was too long ago to reference it. So, here is our latest version, which we modify every year to include new information and to inform new caretakers that will be dealing with our daughter in any way. Feel free to copy / paste and to make it the way it will work best for you and your child. Good luck!

To Whom It May Concern,

our whole family is excited for (NAME) to start (CLASS), and we hope she will both meet your expectations and enjoy her time with her new teachers and her peers.

I wanted to share some important information about (NAME) to help her new teachers understand her needs better.

(NAME) was born with a Congenital Heart Defect called Single Ventricle, meaning she was born missing a ventricle, essentially having “half a heart”.

She has undergone multiple open-heart surgeries, with the most recent one performed on (DATE). We have another procedure scheduled for (DATE) that will require a short hospitalization. Other than that, we anticipate a calm year. However, given the seriousness of her condition, we understand that things can change unexpectedly. She will have regular check-ups with her cardiologist, and we will keep you informed if anything arises that could affect her school time.

Here are a few things to be aware of regarding (NAME):

·        Oxygen Levels and Physical Appearance: (NAME)’s oxygen levels are slightly lower than those of other children, which can affect her temperature regulation and cause changes in the colour of her lips and fingers. Her face and hands may also change colour during certain activities, ranging from slightly blue and grey to dark purple. This is normal for her, and she only needs the opportunity to rest and hydrate as needed. I will ensure she is appropriately dressed for the weather.

·        Physical Activity: (NAME) should be treated as normally as possible when it comes to physical activities. Running and most physical activities are fine for her. She has learned to regulate herself and knows how to respond to her body’s needs. Please, do not hold her back. Feel free to encourage her to participate, but do not force her to continue if she wants to take a break.

·        Regular Medication: (NAME) takes Aspirin regularly, which I administer at home. Since it is a blood thinner, it increases the risk of bleeding, and she bruises easily. This is not a cause for alarm, but it does mean that even a small scratch or lip bite may bleed more than usual. Please ensure any injuries are thoroughly cleaned and disinfected to prevent further issues.
Additionally, she is currently taking (OTHER MEDICINE) for (WHY AND OTHER RELEVANT INFORMATION)...

·        Other Regular Issues: (NAME) has been officially diagnosed with a (PROBLEM). We plan to (DO WHAT) to help manage this, but there may not be quick fixes. (PRESCRIBED MEDICATION, SIDE EFFECTS, FOLLOW-UP) I kindly ask for your patience and understanding.

·        Other Occasional Issues: (NAME) has been experiencing (WHAT) over the past few months. The (SYMPTOM) can come on suddenly, making her (FEELING). If this happens, I believe it’s best to call me so I can bring her home. We have a (DOCTOR) appointment scheduled for the (DATE), and we hope to learn more then. We will keep you updated on whether she will need any new medications for this.

Please ensure that everyone who interacts with (NAME) is aware of her special circumstances. If needed, I would be happy to speak with you and any staff members who will be caring for her to answer any questions you may have.

Obviously, in the event of any kind of distress, please call 112 before contacting me. However, if she is simply feeling unwell, you can reach out to me directly.

I apologize if this seems like a lot of information, but I want to ensure (NAME)'s needs are fully understood and not to be afraid of. There should be minimal impact from her heart disease on her day-to-day life at school, but it’s important that everyone in a caretaking role is aware of her condition.

Thank you so much for taking the time to read this.

We are all looking forward to a fun and successful school year.

Sincerely,

(NAME AND SIGNATURE)