Sibling Issues
Page 2
Please note that the following represent each family's individual experiences and beliefs. Every family is different, and the needs and feelings of the children involved will be unique. We encourage you to seek professional advice if you have concerns or questions with regard to these issues.
Responses to Family Room
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Our first daughter, Hannah, was born with Coarctation of the Aorta and had surgery to repair it at 3 weeks of age. Since then, she's been hospitalized 3 times for angioplasty, and cardiac catheterizations. Only for the last 2 hospitalizations has our second daughter been old enough to ask questions and see our fears. Hannah just turned 5, and Taylor is 3 1/2.
We explained to both girls that Hannah had to have some tests done for her heart, and that Mommy would be staying with Hannah at the hospital. Taylor will be going to either Jammie's house (grandma) or to Shelly's (a friend) for the day, but Daddy will be coming home at night to be with her.
The tests were very important, and not because she had done something wrong, we just have to make sure her heart is working correctly so that she won't get sick.
Hannah asked if she could not go if she promised to behave. We explained that she hadn't done ANYTHING wrong, that her blood pressure was getting too high and we had to do this test to find out why her heart was working so hard. She was very scared and we told her that we were too, but that I (mom) would be with her THE WHOLE TIME and we could hug each other to feel better.
Taylor asked: Will Hannah get to come home? Yes in a day or two. Will Hannah cry? Yes, probably, but Mommy and Daddy will be there with her if she gets scared and wants to cry. (Taylor started crying at this point) Will Hannah get a shot? Yes, but they are going to give her special medicine to drink or maybe a pill to swallow first so that she'll be asleep and won't feel the shot. After the test, her leg will hurt a little, but it will get better every day until it doesn't hurt anymore.
I think that having a "heart child" is a family experience. You should not ever try to "protect" a sibling by not letting them in on what's going on. They're not stupid and can see the crying and hushed phone calls. They may automatically assume they are at fault.
Taylor is a very empathetic child and is very involved with her sister's situation. She comes to all doctor appointments with us, the only time she does not come is if there is a hospitalization (siblings are not allowed in the hospital rooms). I feel that it helps strengthen our family that we are together at the hard times and not apart.
I also call Taylor at least twice (more like 5 times) when I have to be away from her. I am the girls' primary caregiver and usually am with them!
N.C.
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We have four children . The youngest of our four was born with Tetralogy of Fallot. Our other children were 7, 5 and 3 years of age at the time of Zach's surgery. The time preceding the surgery was quite stressfull and the children definitely felt it. One of our biggest concerns was keeping everyone healthy, and with the two older children at school, that proved to be quite a challenge. Our communication with the school was really important in ensuring the well being of everyone.
We answered all of the questions that the children asked honestly. We bought books with simplified diagrams and information about the heart. Often, we found that our 5 year old was having a difficult time verbalizing his concerns, and he started acting out at home and at school. We also tried to take the children to at least one doctor visit so that they felt they were a part of the process and not left out. We definitely answered many questions, but we based our answers on the cognitive level of each child. Of course, we also tried to be as positive as possible. One of the things that was really important for our guys was the need to know what was going to happen to them; who was going to stay with them, where were we going to be, when could they come to the hospital, when could they call and when would we call them. We always made sure that they knew when we were going to call, and during the first few days in ICU, we always sent a little note and small gifts home to them.
As I said before, with the ages of our children, we received a wide spectrum of questions. From "Why does Zach have a boo boo on his heart" to the dreaded question from our seven year old who asked if Zach was going to die. Although that question broke my heart, I always answered honestly that open heart surgery could be risky, and that sometimes children do pass away. We talked about our confidence with the surgeons and the hospital, and also in our faith that God would keep Zach safe in whichever way he chose.
I think I found my five year old's silence even more difficult. He acted out angrily, and when Zach threw a blue spell two days before surgery and we unexpectedly landed in ICU, he broke down with a torrent of emotion. Watch for those children who are silent... there is often much emotion brewing.
My parents flew in from Nova Scotia and took over everything at home for us. They were amazing and so much appreciated. We kept the kids' schedules and routines as normal as possible.
My only advice is to remember that each child is different, and although all of your focus is often aimed towards the child who is facing surgery, try to spend quality time with them, recognize their feelings, and most of all, show them that they are loved.
One thing that helped all of us a couple of days before surgery was when all of the children made special drawings and keepsakes for Zachary to take to the hospital with him. They are still special treasures to this day.
Good luck to all families awaiting surgery ...our thoughts are with you.
K.R.
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My daughters (ages 4 and 3) were prepared for my son's heart condition prior to his birth. We told them that the doctors had seen, through a t.v. screen and a camera on mommy's tummy, that something was wrong with their little brother's heart. We explained that he wouldn't come home right after being born, that he needed doctors to fix his heart. They asked simple questions then, and we gave simple answers back.
Questions were like, "Why does he have a broken heart?" We just said something went wrong when God created him, but no matter what went wrong, God will make him better. As they grew more knowledgeable after the Norwood, when it came time for Brian's Glenn Procedure, they asked more detailed questions. "How does the doctor fix his heart?" I said they use a special instrument (not a knife) to go in and fix his heart. They wanted to know more, but I will save that for when they are older.
It amazes me that when they pretend they go to the doctor, they would say something like: would "Jen, let's take you to the doctor (Brian's surgeon), maybe he can fix the scratch on your leg!"
I am a stay at home mom, and my kids have never had regular baby-sitters. With Brian's birth and first surgery, I was lucky; my 20 year old niece was on summer vacation from college and was able to be my live in "nanny" for the 18 days I was at the hospital. She took them everywhere, and occupied their time very well. I came home every other day, and my husband was home with them every night.
With Brian's Glenn just a month ago, my girls spent a one week vacation at Aunt Bev's house in Wisconsin. To them it is a winter wonderland, because Aunt Bev spoils them to death. She said they didn't even ask to come home, which made me feel sad, but at least I knew they were in good hands.
If I were to give advice for siblings under the age of 5, I would say to keep discussions brief and simplified. Too much technical stuff may scare them. I would definitely keep them informed and not hide anything from them. Be honest in every aspect, and try to keep your spirits high without showing them your emotions.
L.U.
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Sami's heart defects came as a complete surprise to us. She was nine days old when she presented with symptoms (not eating, labored breathing). I didn't dream anything was seriously wrong, so I had my older daughter, Chelsea (2.75 yr. at that time), with me when we went into the doctor's office. Sami got far worse right then and there, and Chelsea and I were pushed to the side for the doctor and his three nurses to do their thing. Needless to say, I was having a breakdown, sobbing while I held Chelsea in my arms. So it was a little traumatic for her.
My mother and her boyfriend, my mother-in-law and her boyfriend, and my father-in-law and his girlfriend took turns taking care of Chelsea for the two weeks we were away at the hospital (4 hours away). Luckily, Chelsea took most of this in stride, thinking that it was a big adventure, spending all this time with grandparents who spoiled her rotten. Also, her routine was kept semi-intact, she stayed with the same sitter who always kept her when I worked, so things weren't as bad as they could have been. She also managed to come down with chicken pox while Sami was in the hospital, so she was a little busy with her own "boo-boos".
Between all of us, we managed to explain things minimally to Chelsea, just what she could understand. She knows that Sami had a "boo-boo" on her heart, and that the doctors fixed it. Thank heavens, she didn't know to ask if Sami could die - after me just being at the hospital to have Sami, she only associated good things with hospitals. However, she still remembers everything - to the point that when Sami is sick and Chelsea can tell I'm worried, the first thing she asks is if Sami has to go back to the hospital. She also knows that Sami will have to go back to the hospital "when she's a big girl" for the doctors to fix the boo-boo again.
I just think the main thing for siblings is to explain what they can understand, and answer their questions as honestly as possible. Also, when you have to be away, they adjust so much better if they are with people they are used to seeing and staying with.
L.S.
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Mikey was two and a half when Tjas was born. He had to be transferred to another hospital (we live in New Zealand, in Christchurch, he had to go on another island to Auckland - where they have a pediatric heart unit) only a few hours after he was born.
My husband and Mikey and I went on the same plane. Mikey, then two and a half, did not understand what was happening. He just wanted to hold his brother, because I had told him all through my pregnancy that he could.
When we came to hospital, they let them stay in hospital family room, so we were all together. I normally stay with Tjas in NICU in the mornings, while my husband would take Mikey to the park or somewhere special (museum, a restaurant...). In the afternoons, I would stay with Mikey and my husband would be with Tjas. In hospital they had a supervised play room, where Mikey could stay with other siblings of the babies in NICU.
After a week, Darren had to go back to work, and he had to take Mikey with him . That was one of the hardest times for me and Mikey (we were never separated before). But he was better than we
expected. I knew Tjas needed me more at the time. I talked with Mikey on the phone every evening and I sent postcards nearly every day.
He had just been toilet trained before Tjas was born, so he started to have accidents - we did not put him back on nappies because that would upset him. We told him what was wrong with his brother and that he need an operation (he had transposition of great arteries) Play specialists in the hospital told him everything. He is a very bright child, it looked like he tried to understand.
At home, we try to give Mikey a lot of attention. We had several people to look
after him. Darren's mum cooked for them and looked after Mikey, and friends did too. I am so grateful for that.
After we came home with Tjas, I tried to spend as much time as possible with Mikey. He developed or started to have a lot of nightmares. He was throwing tantrums, but I know he was just afraid that I would go away again.
J.
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Also see page 1 and page 3 responses
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