Helping Children Cope When a Sibling is Diagnosed With a Serious Illness

March 25, 2019

By Shannon Jones


Congratulations, it’s a boy!

We didn’t know until he was born if he was a boy or a girl, but our bundle of joy made us a family of four—he had an older sister that was four years old waiting at home to welcome him to the family. At birth, he weighed 6 lbs 12 oz; by the time we took him home from the hospital, three days later, he had lost 12 oz.


We weren’t quite sure why he was losing weight, but the pediatrician wanted to see him again in two days and every other day thereafter to monitor his weight. My husband had just started his first year of law school at the University of Utah in Salt Lake City. We were lucky enough that the best children’s hospital in the state was only three blocks away from our university housing complex. We would become very well-acquainted with the hospital staff in the next several months.


My son was diagnosed with a congenital heart defect when he was six weeks old. Those first six weeks spent wondering what was wrong with him were probably the most stressful weeks of my life to that point.

Knowing that there was something seriously wrong, but not knowing what it was, was the worst kind of torture.

But once we determined what we were up against, we were able to create a treatment plan. The defects in his heart would require open-heart surgery to repair. The cardiologist and surgeon wanted to wait until his birth-weight doubled to do the surgery because his chances of a successful outcome would be much better. We ended up doing the surgery when he was six months old and 10 lbs, not quite making it to the 13 lb mark.

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At that point, we had a team of doctors advising us and taking care of him. He had a cardiologist, a gastroenterologist, a nutritionist, a pediatrician, and a heart surgeon. He was taking six different medications that we kept track of on a chart, and we were feeding him concentrated formula through a feeding tube, adding canola oil to it to increase the fat content.


This was a very trying time for our family. I couldn’t sleep, and I would scour the Internet all night, reading everything I could find on my son’s heart defect, making lists of questions to ask his doctors. We had to see a doctor every other day.


On top of everything going on with the baby, I had a four-year-old that needed me and needed to understand what was happening to our family. She was such a sweet, good-natured little girl. Caring for her sick baby brother didn’t leave much of me for her. I was emotionally drained and physically exhausted. At one point, she said to me, “I know the baby needs you more than I do.” She had always been wise beyond her years and very grown up, but that statement nearly broke my heart. For such a small child to have such a profound understanding of what was going on was incredible to me. She was such a trooper. She always tried to be as helpful as she could. Whenever we had doctors appointments, she would sit quietly and look at a book, never interrupting or drawing attention to herself. At the time, I didn’t really know how to best help her cope—we just kind of survived taking things one day at a time.


Below are three things I know now, that I wish I had known then to help my daughter cope.


Communicate, communicate, communicate!

Keep age-appropriate lines of communication open. Obviously, your teenage children will need more detailed information about their sibling’s condition and how it will change the family dynamic in both the short and long term, but even your preschool age children will need to be able to understand what is happening and communicate their feelings. Take every opportunity to talk about it with them. You don’t have to give more information than they are asking for, but be open to answering their questions. I know I answered questions that my daughter had as they came, but we never had discussions solely intended for her about what was happening.


Keep it “normal” as much as possible

Try to keep your routine as normal as possible. Treat your children as you always have before, upholding family rules and schedules. For example, let them maintain any activities they were engaged in before the diagnosis. A normal routine will bring comfort and security to your children.


Say yes to help

I have a hard time accepting help from people, but in this situation, I had no other choice. Let people help you if they offer, and ask for help if they don’t. We were lucky enough to have a brother and sister-in-law that were also attending the University of Utah and lived close by. They were the greatest help with my daughter and support for me during that couple of months. Her uncle would come and get her regularly and take her for a treat and a fun afternoon—she had several sleep-overs with them when the baby was having a particularly hard time. We had several friends and neighbors volunteer to bring meals in, allowing me more time to spend with the kids. The day after my son’s surgery, my daughter went to California with her grandmother to have some one-on-one time with her. Accepting help was so foreign to me at first, but I don’t know how I would have made it through that time without it.

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I am happy to report that today my son is 18 and healthy, graduating from high school this spring. My daughter is 22, graduating with her bachelor’s degree and heading to graduate school, and they have a little sister that completed our family nine years ago. Although my son’s health issues have been a trial for our family at times (he had one more surgery when he was six to implant a pacemaker), we have all made it through happy and healthy!


Shannon Jones works in marketing and moonlights as a taxi driver for her kids—she also spends a good amount of time looking for her car keys. She lives with her husband and kids in Huntsville, UT.


Photo by Xavier Mouton Photographie on Unsplash

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