Helping parent cope with very sick child

[michlee]

Hi everyone-

My sister just had a baby with a congenital heart defect. The baby, a little boy, had to undergo open heart surgery last Wednesday when he was six days old. The surgery went really well and the baby is now recuperating. He'll probably be fine, although his condition, as you might expect after open-heart surgery, is still critical.

My sister and her dh are obviously very stressed by this whole experience and I want to help. However, I'm not really sure what would be the best way to help them cope with this very difficult time in their life.

Has anyone here had to go through a similar experience with their child? And, if so, what words or actions did you find most helpful?

-Michelle

PS- I live clear across the country from my sister so I'm not able to offer to clean her house, cook dinner, stay with her at the hospital, etc.

[kthomp]

Michelle,

My daughter was diagnosed with VSD (a hole between the two lower chambers of the heart) when she was a week old. It was an incrediblely scary, hard time for my husband and I. The doctors took the "wait and see" aproach with her and decided when she was 2 1/2 months old to repair the hole. She had open heart surgery at Boston Children's Hospital in the beginning of November. The hardest part of the ordeal was having to give her to the nurses before surgery, and then waiting during the surgery. But she came through it all fine and is now a beautiful, healthy 8 month old.

As for how you can help- just let your sister know you're there for her. I wouldn't recomend saying "I know how you feel", it doesn't really help in a situation like that. You should call her, and let her know she can talk to you any time. If long distance rates are a problem, offer to let her call you collect or send her a calling card. Also, is the baby still in the hospital? If so, you could try to send some flowers (or other little gift) with a card.

I know when my baby was going through her surgery and recovery, it just helped to know people were thinking of her and pulling for her. She also got a lot of ballons (don't send latex ones, though, most hosptials don't allow them due to allergies) and stuffed animals, which was a nice reminder that people cared.

If there's anything I can help you with at all, feel free to PM me. There's also an awesome group for parents of children with CHD (congeital heart defects) that I belong to and I would be happy to give you their info so you could tell your sister about them.

I'll be thinking of your nephew and your sister.

-Kerri
mom to Allison, 7/26/03

[deborah_r]

I don't have any advice as to what to say, but as a reassurance wanted to emntion my nephew had open heart surgery as a baby and he is 14 years old now and perfectly healthy! I do not remember the experience vividly enough to tell you what to say to your sister. I was a teenager at the time - I know I was very concerned about him and my sister and her husband, but I just do not remember what I said or did to try to be helpful.

[michlee]

Kerri and Deborah-

Thank you very much for your replies. I'm planning to send my nephew a pair of Robeez to keep his little feet warm while he's in the hospital. Kerri, thank you for letting me know about the support group. I will let my sister know one is available in case she is interested. I'm glad to hear your daughter was treated by doctors at Boston Children's Hospital. I understand they are among the best in the country, if not the world, at treating children with CHD.

-Michelle

[deborah_r]

Oh, by the way, my nephew's surgery was also at Boston Children's Hospital. My sister still raves about how great they were.

[egoldber]

No advice, but just another story with a happy ending. :) My very good friend in college had a baby the year after we graduated. Her son was born with a severe heart defect and ended up being flown across the country at a few days old for a heart transplant. Now, 14 years later, he is as happy and healthy as can be!

My very best wishes for your sister and her baby.

[starrynight]

I just wanted to send hugs and prayers their way for him.

[drsweetie]

Hey Michelle -- my daughter required surgery at 2 weeks of age to fix a congenital heart defect called coarctation of the aorta (basically, her descending aorta closed off). She is now a healthy and VERY active 9-month-old. Yay for happy endings!

Even though you don't live close by, would it be possible for you to arrange for a housekeeper or to have meals delivered? Those are the things I wished I'd had after Laura's surgery.

Here's hoping that things go smoothly.

[michlee]

Thank you all again for your replies and inspiring stories! The baby is recuperating really well and will probably be able to come home in 10 days or so.

I'm planning to go out to see my sister in a few weeks. I will definitely offer to get her a cleaning service. I was also thinking I could make and freeze some meals while I'm there. (I'll do the cooking at my mom's house so I don't disturb her too much.)

-Michelle

[Tondi G]

Ya know... you could also maybe send them a fruit basket??? Harry and David fruit is SOOOO yummy and might be a nice thing to have when they get home. Even if meals are tough they could grab a pear or an apple..... it's something to have on hand! You could also send them some gift certificates for restraunts in their area that deliver.... you can't make them meals since you live far away but you could provide some meals on you... I would've loved that when DS was first born!

I think the Robeez are a great idea and the make and freeze meals to stock her freezer after you leave from your visit I'm sure will be appreciated greatly!

Sending fast healing vibes to the little one... hope he can come home SOON!!!!!

~Tondi and Mason 7/8/01

[lmintzer]

I'm sorry to hear that your sister is going through this with her child. It must be terribly scary for her as well as devestating to watch her child suffer.

I work with pediatric burn patients and their families, and I can tell you that the number one thing you can do for her is to listen to her story. Now, I know that may sound simple or like something you are already doing, but many parents with sick children find that the medical staff is too busy to really listen to their experiences And well-intended family members and friends often do a lot of changing the subject or trying to distract only beecause it is so uncomfortable to come face to face with pain and suffering in a child.

So, if you can (even by phone) call your sister and can hear her story (what she's going through emotionall watching her child go through this experience) and even listen to her detail the hospital experience, this could really help. Even internalizing, non-talking types will open up some if asked the right questions and when lent an open, sympathetic ear.

Wishing her and her little one peace and comfort and speedy healing.