There are often times where talking about things like TTTS, TAPS, and SFGR with kids can be difficult because you don’t know where to start. As parents, we want to find out the best way to talk to our children about the complications we experienced during our pregnancies.
Sometimes things go well, but there can be long-lasting effects that can be difficult to explain.
This doesn’t always extend to survivors of twin complications. There is a need to talk about it with siblings and extended families or friends and understand what it is all about.
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Talking About TTTS, TAPS, and SFGR With Kids
There’s no specific guidance on talking about twin complications like twin-twin transfusion syndrome (TTTS), twin anemia polycythemia sequence (TAPS), and/or selective fetal growth restriction (sFGR) with kids. There is no easy way to talk about the loss of one or both twins. This article is designed to give pointers and eliminate the negative languages that seem to lurk around this area.
Opening The Conversation
Kids are naturally curious, and eventually, there’s going to be many questions. For siblings, they might notice extra tension in the family and that their parents are going to many appointments. With any problematic diagnosis, there are going to be high emotions, and kids must understand why.
Your child can understand what they want to know, depending on how old your child is and how they naturally cope with things. Talk to your partner first and ensure that you are on the same page, talking to your kid(s).
Take the time to ask questions to see what they already understand and talk about what they know. Kids must lead the conversation because that’s how you can gauge what their understanding is. Use open-ended questions like:
For Siblings And Twins
“What do you already know about twins?
“Do you know what TTTS is? ”
“What do you think a placenta is?”
Another essential tip is to ask first if you want to share information. Kids aren’t always ready – they can be tired, overwhelmed, and sometimes just not interested. Ask things like:
“Can I tell you what I know about it?”
And if the answer is no, then pick another time. Leave it with the child to initiate the discussion again. If the answer is ‘Yes,’ then make sure you explain things in a precise, age-appropriate way.
For Siblings
“The babies are sick, and that’s why we are going to the doctors so much.”
Yes! I am going to the doctor because the babies are sick.’
“I’m sad because the doctors are worried about the babies.”
You can move to reassuring things like:
“The doctors are doing everything they can to help the babies.”
“The reason we have so many appointments is that the doctors are helping the babies.”
Let your child lead the discussion as much as possible, as this will give you a better idea of what they want to know.
Processing Information
Be aware of how your child responds to the information and be prepared for any reaction. Children may be upset, but they also may be angry or not seem to react at all. Responses can play out in all sorts of ways, like throwing temper tantrums or acting out at (pre)school.
Listen to what they say and watch for non-verbal cues and changes in mood or behavior. You could ask, “What do you think or how do you feel about all this? Do you have any questions about anything we have talked about? “
Also, children may need time to take in the information, so their reactions may be delayed or vary from day to day. Build check-in times into your daily life to have more conversations, give updates, see how your child is doing, and see if new questions have arisen.
Discussing TTTS, TAPS, SFGR With Your Kids
Maximize opportunities to talk and share information when your child is curious and asking questions. Talking about TTTS, TAPS, and SFGR should be a natural conversation with your kids as well.
If you don’t know the answer to your child’s questions, take the opportunity to find the answer together. It will help your child gain the confidence to ask further questions.
Use varied resources to help talk to and educate your child, including books, videos, pamphlets, drawing, or play.
Dr. Jeanine’s tip: About Kids Health – Talking To Your Children About Illness is a valuable resource!
Honesty Is The Best Policy
It’s essential to be honest and answer questions for the children. Be open. After birth, there will still be appointments for follow-ups and checks, and keeping optimistic about this will help.
Be truthful. That doesn’t mean going into every little detail. That’s rarely helpful. But it does mean that if the condition is severe, you should say so. For example: ‘The babies are very sick.’
Don’t hide your feelings. If you are sad or worried, say so. You want your child to know that it’s okay for them to feel that way. As you move through the situation, you will need to find healthy ways to deal with your sadness and worry, as your child will be watching you for cues. Sometimes a mental health professional can be beneficial when it comes to helping both you and your child.
Meet Joseph And Jacob
Whenever we have talked to the boys about the differences, we have always just tried to meet each kid where they are at developmentally. Though they were both affected by being delivered at 27 weeks due to TAPS, TTTS, and SIUGR, they each have their own issues from being born so small and sickly.
Joseph noticed pretty early on that his brother couldn’t walk, eat, and do everything like him. When he was younger, we would just explain that Jacob has something called Cerebral Palsy and his muscles don’t work as well as his. Jacob has never outright asked why he is different. Mostly he just listens and participates when Joseph asks. As they got older we explained that Jacob’s brain doesn’t’ talk to his muscles like it should.
Although Joseph isn’t nearly as affected by everything they went through, he developed hydrocephalus around 18 months and had brain surgery to put in a shunt to drain the extra fluid. He can feel the shunt just under the skin on the side of his head. When he was little we just explained to him that he had too much fluid in his brain and the shunt drains it into his belly. Now that they are 6, we have had more in-depth conversations with them.
Being Honest
They know that they both had brain bleeds because they were so little and sick when they were born. We also explained that Jacob has more brain damage than Joseph and that’s why he is affected more. When they asked what brain damage meant, we just explained that their brain was hurt, and parts of it don’t work. They have both gone through years and years of therapy to help with their developmental and physical delays. They are 6 now and doing well but I imagine eventually there will be more questions.
We believe the most important thing when answering them is to just be honest and explain in a way that they can understand.
Jamie Gibson, moderator, Twin Anemia Polycythemia Sequence (TAPS) Support Facebook Group
Tips:
Older Siblings
- Talk about the importance of the appointments that they help doctors understand what is going on and how they can best look after the babies.
- Make appointments a positive experience. Invite children to ask questions and involve them in the appointments
For Twins
- Talk about them being sick as babies, showing them photographs, and explaining different things in the pictures. Let their natural curiosity lead the conversation, and don’t hide complicated details. Just keep it age-appropriate.
- Involve them in appointments. Let them ask questions, and involve them in their long term care
- Talk about how lucky they are they can help other kids out.
- Maintain positive language about appointments and invite them to talk about them.
For Everyone
- Be honest –We worry about some things, but we talk about how it makes us feel and that we are so happy that they are well looked after.
- Always age-appropriate. You know what your child is capable of understanding. But if you don’t know the answer, find out the answer together.
Keep It Age-Appropriate
It’s essential to make sure that any information given is at a level your child understands. Honest and straightforward, but with consideration for the child’s age. It’s necessary to break down language, and specifics aren’t always required.
Make it an honest, simple overview. Don’t overcomplicate it. Things like “You were born very sick, and you spent a lot of time in the hospital as a baby. The doctors helped make you well again.”
You don’t need to give more information than they ask for. If kids want to know more, they will ask for more. If children are curious, they will ask more questions, and this is an opportunity to discover things together if you aren’t sure of the answer.
Language To Avoid
It’s a delicate conversation to have, and sometimes we can use language that we don’t realize can negatively impact. Avoid terms like stealing or taking blood in the case of TTTS or TAPS.
Common Questions:
“Is it my fault because I got all the blood that she gets so sick all the time? “
“Did I do something wrong? “
“Am I in trouble?“
“It’s my fault that my brother is deaf. “
Reassure the kids it’s not their fault. It’s all to do with the placenta. If there’s a fault with your plumbing, and your bathroom is getting water, and the kitchen isn’t, your plumber doesn’t describe it as the toilet stealing water from the kitchen. The fault lies in the plumbing with twins as well.
Avoid language that might blame or cause worry that something they did caused the problem. Kids feel the seriousness of the situation and can take things personally.
Kids are sensitive and feel these things on a deep level. It can create feelings of guilt and blame for them. Reassure the child that nothing they did (and reassure yourself it is nothing you did). It can be beneficial for them to also receive counseling if this is affecting them severely.
Meet Addison And Rhiannon
I’ve always tried to be honest (in an age-appropriate manner) with the kids about why Addison and Rhiannon are so different. They know that when they were in mommy’s tummy, something called Twin to Twin Transfusion Syndrome happened. It was nobody’s fault, it just happens sometimes with identical twins. They were both really sick, with Rhiannon not getting enough blood and fluid, and Addison getting too much, but a great doctor performed surgery to save their lives. We were so lucky to have that surgery and very grateful that they survived. However, since they were sick, Rhiannon did not recover like Addy did, so she has brain and kidney damage. That’s why she has microcephaly, cerebral palsy, epilepsy, and kidney disease. I tell them there are other identical twins out there who don’t look identical for the same reason or for many other reasons, too.
Maria Dawson Torsney, founder of “Identical Twins But Medically Different“
What Are Ways To Discuss TTTS, TAPS, And SFGR With Kids?
One of the biggest questions is how to describe TTTS, TAPS, and sFGR to kids. Illustrations are essential, but you don’t have to be the world’s best artist. Simplicity and honesty are the best policy.
Here are some suggestions for language.
Placenta
- What’s a placenta? It’s a special organ that grows inside the uterus, and it helps the babies grow. It helps keep the babies healthy. The babies are nice and warm inside the belly. They have fluid around them that allows them to grow. It also helps them practice things like breathing, swallowing, moving around, and rolling over. What’s really cool is that the babies drink in this fluid and then later pee it out and then drink it again!. It’s all about practicing the things they need on the outside to grow.
- The babies are attached to the placenta by their umbilical cord, helping bring nutrients to the babies. The placenta helps filter out bad things and brings in good things like food from their mom. Twins who share a placenta also share many blood vessels in the placenta. Most of the time, the placenta takes care of that things are shared nicely, and the babies grow together.
TTTS
- TTTS is when the placenta has a problem, and it sends too much blood to one baby and not enough to the other. One baby has to pee a lot, and the other baby doesn’t pee at all. This can cause trouble for both babies, and they get really sick. Mom can also be sick because she has a lot of fluid in her belly, making her belly huge and uncomfortable, and it can hurt.
TAPS
- TAPS is when those connections are tiny, and only red blood cells pass from one baby to the other in the placenta. This means one baby’s blood is really thin like lemonade and doesn’t carry enough oxygen or food around their body. The other baby’s blood is thick like ketchup, and it can make their heart tired.
SFGR
- SFGR is when the placenta doesn’t develop properly, and the babies don’t get an equal share. It’s like breaking a cookie in half -sometimes it happens that the sides are even, but sometimes it happens that they aren’t. This means that sometimes one baby gets a little less space (or cookie) to grow.
Keep it relatable to the kids and at their level. A great example is this mom in the US, who creates videos with her 3-year-old explaining different surgeries. It’s all done with play-doh – and the simplicity is fantastic. The video explaining a c-section is terrific!
You don’t have to go to this extreme, but it shows that you don’t have to be a fantastic artist. It’s just about simplicity.
Talking About Death
Unfortunately, death is a harsh reality of the complications of twins sharing a placenta. It’s not always the case, but there is the possibility. Talking about this with children (the surviving twin and or his/her sibling(s)) is always tricky. We encourage openness and honesty, as talking about the complications of TTTS, TAPS, and SFGR is important for kids as well.
As we’ve already discussed, keeping the conversation age-appropriate, with compassion and understanding, and honesty is always the best policy.
Our group members have shared some of their ways they remember their babies in the following gallery.
Religion
If religion plays a part in your life, then talk with your religious leader, and find comfort in your faith and teachings. Your community is also there and can offer a network for you.
Observances
Observe special dates and remembrances. Keep memory boxes and photographs, if that is what you want. Involve the whole family in recognizing the date. On these dates, it’s also okay to have mixed feelings of joy and grief.
Survivors
Remember that survivors may have feelings of guilt associated with these dates as well, so make sure they feel loved and supported at this time. Recognize their feelings and talk with them about them.
Support
Seek support. There are many good grief support networks out there that offer peer to peer support. (We’ve included a list at the end of this article.) But also seek professional help. Grief is a tricky thing, and professional care might be able to help you with this.
Ultimately, there is no right or wrong way to grieve. We’ve included resources you might find helpful at the end.
You Don’t Have To Do It Alone
The most important thing to remember is that you don’t have to do things alone. Connect with other families, professionals, your faith leaders – and share your stories.
Stay connected with each other as well. Grief, anxiety and worry hit people differently, so it’s important to talk to your partner and your families about how you’re both feeling. Couples counselling and therapy is always good.
Remember to keep conversations with kids honest, simple, and age-appropriate, and let them lead the discussion. Children are open books and will tell you what they want to know. Talking with kids about TTTS, TAPS, and SFGR shouldn’t be difficult, and we hope that this has given you some guidance on how to proceed.
Resources
We compiled a list of resources and groups you can use to help you along your journey. This list is continuously growing and contact us to update it.
Photography
Now I Lay Me Down To Sleep (US)
Loss Groups And Websites
TTTS Survivors with a Guardian Angel
Centre for Loss in Multiple Birth (CLIMB), Inc
Twin to Twin Transfusion Australia, Inc
Twins Trust Bereavement Support
The Neonatal Butterfly Project
Support Groups
Identical Twins But Medically Different
Twin Anemia Polycythemia Sequence (TAPS) Support
Books
Toughest, Teeniest Twin Soldiers: Living and Dying Through TTTS (adult)
Sunshine after the Storm (adult)
Please contact us to be listed as a resource.
This webpage would not have been possible without the assistance of Dr. Jeanine van Klink, assistant professor at the LUMC and head of the long term follow-ups at the LUMC, Leiden. We are grateful to her for her support, advice and assistance in this article.
