Keeping the Balance amongst Siblings

It’s one of those challenges that all families affected by a Congenital Heart Defects (CHD) face…how to keep the balance amongst siblings. There are so many issues that come into play when considering how to treat your children who are not afflicted with a CHD. There’s a fine line – you don’t want to burden them with too many responsibilities or make them feel less important, yet you also don’t want to spoil them to overcompensate for the fact that so much attention is paid to their ill sibling. How do you handle it? Where do you turn for advice? We’ve compiled some tips and advice that was gathered from other parents, online resources, as well as publications by child psychologists.

· While it is very important that all siblings be informed about your family’s specific CHD situation, it’s important to set an example that it’s not something we have to dwell on every day. All children want to live as normal a life as possible. So, by educating your children about CHD rather than making it a daily focus, you’ll be off to a great start in establishing a balance amongst your children and your entire family as well.

· Allow your children who do not have a CHD to choose a specific responsibility in order to empower them. This will let them know that you value their help yet you won’t be burdening them with too many expectations. For example, maybe a sibling can simply be a reading buddy for your child with a CHD.

· Remember to let all your children know how much you appreciate their help. If they happen to be too young to actually be of any significant help at the moment, you can always tell them how much you appreciate their understanding and patience when you have to assist or focus on their sibling who is sick.

· Although it can be tempting for many parents, avoid spoiling your other children in an effort to make up for the attention you feel you’re giving your child with a CHD. Spoiling them can include giving an abundance of material items, too much attention, or even treating them with kid gloves as though they’re too fragile to handle your family’s situation. They will grow up with a sense of entitlement or even resentment. Kids are smart – they will eventually realize why you’re spoiling them and will in many cases feel like they didn’t truly earn the things you gave them or the over-attentiveness you showed them.

· Encourage your children to express their feelings. Talking can be such a powerful tool when it comes to children. It doesn’t matter their age – you can always adjust your conversations by using developmentally appropriate language to answer their questions or respond to their statements. Be truthful yet simple and to the point with your children. One story we came across involved an older sibling who asked why his little brother was sick; he thought he did something wrong. In this situation, it was suggested that the parents have a real conversation with explanations that were simple and truthful. For example, you might say “You didn’t do anything wrong; your brother just has a special heart. We’re all special in our own ways.” Sometimes, it may seem impossible to discuss CHD related topics with your children; however, it’s much wiser to at least let them know you heard them and are willing to try a discussion rather than simply changing the subject.

At the end of each day, this whole issue does tend to feel like quite the balancing act. However, it is so important to make a conscious effort to remember to think about how you’re treating all your children. Do they feel equally important? Is one child feeling neglected or perhaps, on the other hand, that you’re actually being over-attentive to him/her? These are questions we can stop and ask ourselves each day to try to keep that balance and ensure that our children sense that balance amongst their sibling relationships.

Transposition of the Great Arteries (TGA) and Genetics

The American Heart Association posted a new "Ask the Pediatric Cardiologist" question today on DTGA and genetic factors, including increased risk of having children in the future who also have heart defects. For information, click here. According to this source...

For a couple who's had one child with DTGA and has no other family members with transposition, the chance of having another child with DTGA increases slightly to about 18 in 1,000 or 1.8 percent. This is also about the same chance of this baby being born with a form of congenital heart disease other than DTGA. This gives a greater than 98 percent chance that the baby will be born with a normal heart.

The Sibling Factor

I often think that siblings have the toughest task of any family member when a family is faced with CHD. Not only do they lose much of their parents attention during "high-stress" periods, they fear for their sibling, and they are often left out of the loop, but realize something is wrong.

I can see substantial changes in my oldest daughter, who is now five. She was a few weeks shy of turning four when her sister was born with TGA. Her world crumbled around her - instead of going to the hospital and meeting her new little sister we'd all been so eagerly anticipating, she came to the hospital and waited a few hours, until we realized something was wrong and sent her home with her grandparents. It was several days before she saw us again, and her new baby sister was hooked up to machines, swollen and blue. I didn't realize at the time how bad her new baby sister looked - but looking back at the photos, I'm shocked that I let my older daughter see her in that condition. I guess we just do the best that we can at the time.

My oldest daughter was bounced between family members while we stayed in the hospital that first month. It was also the first month of school, and she missed the crucial bonding period in her new preschool. By the time we came home, she'd fully regressed in her potty training, and had stickers covering her babies "to monitor their hearts."

The next few months didn't let up for her. We faced a flurry of doctors appointments every week, the challenge of fitting into a preschool with kids she didn't know (who by that point all knew eachother), and a crying, frantic bundle of energy that she so desperately wanted to cuddle with, but couldn't stand to be touched. Our oldest daughter tried so hard to love her baby sister, to hold her during "good times" and she was fiercely protective of her. I remember one time I had to take both girls to the doctor, and she got very angry with a nurse who was going to give Sadie a shot. She just wouldn't stand for it.

Over the past year and a half, the baby has gradually calmed a bit, and now will even give her big sister hugs from time to time. Just the other day, the eldest was hurt, and the youngest came running to give her a hug and kiss. It melted my heart - finally my big girl is getting the baby sister she's always dreamed of.

Since those early days with the baby I've seen a lot of changes in my oldest daughter. She's more self-reliant. She's confident and more outgoing. But at the same time, she panics if anyone is sick or hurt. She is scared of the doctor. And she's incredibly clingy with the people she is closest to. It's not a surprise in anyway that we've noted these changes... but it is sad that she's gone through these changes so quickly. I miss her innocence.

I'm so proud of my oldest daughter. She has been such a good girl throughout the entire ordeal, and she's so incredibly compassionate and strong. There were many times this past year during this whole ordeal that I simply would not have made it another day without her. She's a shining light and I'm so thankful she came first, to light the way for her special little sister.

Makenzy's Story

What is it like to be a big brother or sister to a kid with a heart defect? Makenzy, age 8, has a sister who is one and has a HLHS. Here' s what she wrote...

When my mom had Jameson, I was very sad. My Aunt had to lie in bed with me sometimes at night and talk to me about it. My Aunt and uncle were watching me and my sister while my parents were gone. When I came to see Jameson at the hospital, I was sad when I saw the stuff they had on her. But I was very happy to see my parents and Jameson.

I remember the first time Jameson came home. Me and my sister really wanted to hold her but we couldn’t. My parents told me that she was very sick and thought it might hurt her. The first time I saw her scar I started to cry. My parents told me everything was OK. WE have to wash our hands before we touch Jameson because it is important we don’t get her sick. We do not go out much because Jameson might get sick.

I am very happy that my sister is here with us today.

Thank you for sharing your story, Makenzy! Lots of other kids, like you, have brothers and sister's with CHD. I'm sure they will like to hear your story, because they have a lot of the same feelings you do. Jameson is lucky to have you as a big sister!