Telling Your Child About Their 3q29 Diagnosis (Plus 3 Real-life Stories)
If you’re a parent or caregiver of a child with 3q29 deletion or duplication syndrome, there’s a lot on your plate. You manage appointments and therapy schedules, conduct endless online research, and support your child’s needs on a daily basis. Not to mention all the other tasks needed to make your household run.
In a flash, days turn to years and you realize you still haven’t had the conversation with your child about their 3q29. You're not alone if it’s something you’ve been putting off. A lot of parents don’t want to have this discussion. It’s common to wonder:
When is the right time?
How do I bring it up, and what do I say?
How will they react?
What if I don’t know the answers to their questions?
The reality is that since 3q29 deletion and duplication syndromes contribute to other physical, behavioral, and mental health challenges, it’s likely you’ll be talking about those with your child before you talk about the chromosomes that cause them.
But when to bring up 3q29 specifically? There’s no perfect answer. But we’ve linked to a couple of resources that might be helpful and shared personal stories about how some parents talked to their children.
Factors to Consider When Talking to Kids About 3q29
How and when you tell your child about their 3q29 diagnosis is up to you. Sometimes the conversation just happens spontaneously with no advanced planning. Other parents or caregivers need more preparation to determine the right time and wording.
In cases where the signs of 3q29 are mild, the news may come unexpectedly. On the other hand, if your child has already been through a litany of tests and therapies, one wonders if they’d be relatively prepared to hear about yet another diagnosis.
Either way, here are some things to consider as you navigate the best way to communicate, whether it’s your first talk or part of an ongoing conversation:
Consider Age and Development
What age is best to start talking to your child about 3q29? There’s no right answer here. Younger children may not be able to fully understand what it means to have a 3q29 syndrome (and let’s face it, most adults don’t either) but there might be some benefits to bringing it up early.
For example, young children can sense the vibe around them. They may notice their parents stressed or anxious at times. Or maybe they know they have a different experience at school than their classmates but don’t understand why. Perhaps they have to go to the doctor more often than their siblings.
Because of this, it could be helpful to begin to communicate with your child about their 3q29 diagnosis in a way they can understand given their age and developmental level.
Use Language Appropriate for Age and Emotional Readiness
When discussing 3q29 with your child, age-appropriate language and concepts go a long way. Luckily, technical or medical jargon isn’t usually helpful, or even necessary. Simple, clear, and honest explanations will most often get the point across. At least at first.
Bonus points if you can relate it to something your child already understands! For example, maybe they watch a show with a character who has a similar challenge or have a favorite cousin who also happens to experience something they do, like ADHD, for example.
Remember—you don’t have to tell them everything all at once. Often, it’s easier to introduce the topic gradually, providing more information as the child grows and can better understand their condition.
Reiterate Love and Support
Kids will react to news differently, just like adults. Some may not understand enough to give it much further thought. Others may feel relief they have an explanation as to why they seem different than their peers. And some may feel scared or like “something is wrong with them.”
As a caregiver, this is your chance to shine. No matter how they react, reinforcing that they’re loved and supported will give them the confidence to ask you more questions (when they’re ready), confide in a friend or other trusted adult, or seek out additional support.
Also, if children think a topic upsets their parents or caregivers, they’re less likely to bring it up out of fear of causing upset. Letting them know it’s okay to come to you in the future with questions and concerns makes them feel more comfortable opening up.
What If I Don’t Want My Child to Know?
Thinking about not telling your child about their 3q29 diagnosis, or waiting until they bring it up first? That’s completely your choice and as a parent or guardian, you know best. However, just be aware that research related to this has found:
It’s not likely a child will ask about it on their own.
People who find out about a known genetic condition later in life, or unexpectedly from a medical professional, often wish they’d been told about it earlier.
Children appreciate being trusted and feeling like secrets aren’t being kept from them.
Letting kids know about their conditions allows them to find support they might need and helps them develop healthy coping mechanisms earlier.
This study and this academic paper talk about the above points in more detail if you’d like to read more about the benefits of talking to your child about their genetics.
Real-Life Stories: How Some Parents Talked To Their Children About 3q29
Amanda & Max: Slow and Steady
My son Max (age 10) has been tube-fed via a stoma since he was a baby and has 1 to 1 support in a mainstream school. I feel that these two tangible needs have helped him realise from the get go he is a little different and requires more support.
We have always maintained a very open dialog with him and his siblings about how everybody is different and that Max needs more help than others. Equally, we can all have things we are good at (Max’s forte is dancing)!
I think for us it's keeping the conversation light, making sure they feel they can come to us with questions anytime and knowing that it's okay to not 'work the same' as everyone else.
We have not gone into specific detail about the microdeletion yet, simply because it would be too much for Max to comprehend. However, we have begun to read books about different disabilities to him in order to aid his learning.
When the time is right to divulge more, it will certainly not be a shock and he will know how loved and supported he is and how proud we are of all his achievements.
R. & M.: “No secrets, no shame.”
By the time we received the 3q29 Deletion diagnosis when my daughter was 6 years old, we’d been collecting diagnoses since she was a baby. We already knew she had a developmental disability and we already understood that she wasn’t going to just “grow out of it.”
We’d had time and practice in talking with her about diagnoses and disability and about doctors and therapists. Getting the 3q29 diagnosis was actually helpful because it tied everything together with an explanation.
My mantra in those early years was “no secrets, no shame.” So we told her as soon we knew.
She was really only starting to talk then, and I knew she wouldn’t understand. But I wanted to start using all the words–3q29, genes, chromosomes, disability–so by the time she did start to understand, it would be something she’d always known.
I believe kids feel things long before they have words, and they will imagine an explanation if they’re not getting one from adults. So I want to always be the voice in her head explaining and empowering her.
My mantra has morphed into “disability pride and disability liberation” over the years, as I’ve grown in my understanding too. These are conversations we have often over the years, in short exchanges, and including all my kids.
By making her 3q29 diagnosis a normal part of our life, we don’t have to get the conversation just right on any one try–we get lots of chances to find the words that work best to help her integrate all the parts of herself and her life.
Christina & James: A Window of Opportunity
James was 11 and I wasn’t sure how much he knew about his genetics. We’ve been to so many doctors and specialists over the years, and each time I had to mention “3q29”. James heard it said often, but never asked what it was.
His sixth-grade science class was studying genetics and James was really into it! One night during dinner, he told me that he learned people can have “problems with their genes” and then gave me some examples. I got the feeling he thought it was ‘interesting’ to have different genes.
This was my chance! After dinner, I used the opportunity to explain that he, too, has slightly different chromosomes than most people.
If anything, his initial reaction was one of mild excitement, as if he were some kind of genetic celebrity. I told him people wanted to learn more about his chromosomes and he felt flattered and important.
We left the conversation there for the evening. I didn’t get too detailed about what it means for his health, but said it explains why he needs a gastric tube and why he experiences some things other kids don’t. I said he could ask me questions whenever they came up. It’s been a few years and he doesn’t ask many questions.
I think I told him at the right age because by that time, despite being a little different from other kids, he was still pretty confident and happy. He already had a good sense of “who he is” as a person and that didn’t seem to change. I don’t know how he feels now about his diagnosis but I’m relieved he knows.
Other Tips For Talking to Your Child About 3q29
Decide which adult(s) should start the conversation. If there are multiple adult caregivers in your family, consider if there’s one that’s best at making the child feel most comfortable during sensitive situations. If so, nominate them! Alternatively, adults can team up to support their child—and each other—until it becomes easier for everyone.
Keep it relaxed. Kids often prefer to have sensitive conversations or ask questions in casual environments. For example, you might find conversation flows better in the car or while performing daily tasks or chores.
Don’t forget the sibling(s)! If you have other children, consider how and when to share this information with them as well. Unaffected siblings are observant and may have many questions they don’t know how to ask. They can also be a rich source of support, especially if they have a better understanding.
Get help if needed. While it’s been shown that children prefer receiving information from a trusted caregiver like a parent, enlisting the help of professionals like a therapist, pediatrician, or genetic counselor can be beneficial.
You don’t have to have all the answers. This bears repeating. You don’t have to be an expert to be a loving and supportive caregiver who does their best.
Final Thought
Whether you’re confident you’ll know just what to say when the time is right, or you’re wringing your hands over when, how, or if to even tell your child about their 3q29 diagnosis, we know it’s not easy for anyone.
Here are two additional resources that might be helpful. They don’t address 3q29 specifically but offer good tips on talking to kids about any genetic or inherited condition:
“Talking To Your Children About Genetic Conditions” (.pdf)
“How To Tell Your Child They Have A Genetic Disorder”
Visit 3q29.com for more information on 3q29 deletion and duplication syndromes and to learn more about ongoing research.