Congenital heart disease

Update: When your child needs heart surgery

It’s been three months since William’s heart surgery. Here’s what’s happened since.

When we met Anna earlier this year, her three-year-old son William was days from open-heart surgery. William was born with a hole in his heart that left his heart unable to pump blood the way it should.  Surgery was the only option to fix what doctors felt would become a life-threatening condition.

On Feb. 10 William underwent a three-hour operation. With William on the road to recovery, we reconnected with Anna for an update on her family’s story. The following excerpt comes from her blog Heart of a Boy.

 

Surgery day

William’s surgery was over by 4 p.m. We didn’t expect him to be awake. It usually takes time for the anesthesia to wear off and kids tend to wake up slowly. But as we got closer to his room, I could hear William screaming. I walked in to see him flailing his arms; the nurses were struggling to take his vitals, an ECG and chest x-ray. Every time he squirmed to sit up, his IV and drainage tubes would pull, triggering a cry that we’ve never heard from him before.

On top of that some of the medication he was on caused some hallucinations and normally where we would be able to explain and reason with him, he did not understand. After a while, I actually had to leave the room because I was feeling dizzy and really upset. I completely broke down in the hallway. I had a nurse who was walking down the hall check in on me. I then phoned a close friend to chat. William had a rough first night.

Congenital heart disease

Three weeks after surgery

William’s recovery is going really well. We have had a lot of love and support to help us through this. I feel very fortunate to be able to stay with William during his recovery. While his sternum heals it is so important that he is lifted properly and that there is no rough play. Each day it is getting harder and harder to hold him back because he just wants to go. This morning when he got dressed I could see how well his incision is healing and I am just amazed by how strong he is.

Congenital heart disease

William has been having few nightmares which is one of the things to expect when your child has gone through something traumatic.
One day when he woke up from his nap he was screaming and crying, “My arm! It hurts, it really hurts.” We asked him to point to where it hurts. He said, “Where the needles are, take them out, it hurts!” We needed to just reassure him there were no needles and he was OK.

William is no longer on any pain medication. Yesterday was the first day without any Advil. We have been doing a lot of different activities than we usually do which is a lot of fun. William has a new love for Hot Wheels and planes. We have been doing crafts, painting and sledding down the hill together. We bake and read a lot of stories. The quality time together has been wonderful.

 

Getting back to normal

At the first appointment following his surgery, we learned that the hole the surgeons patched in William’s heart had been about the size of a toonie. As time goes on we will distance ourselves from the surgery with only scars as a reminder. I hope to help other parents who might be living the same experience.

As a parent, seeing your child through a high stakes health episode is difficult. I found a few things helped make it easier on everyone.

Finding a support group: Trying to meet new people might feel like an impossible task during this time. But meeting another parent who understands what you’re feeling and can tell you what to expect was extremely comforting for me. We learned about our local family support group (Little Hearts Family Group) through a pamphlet included in our hospital orientation package.

Support groups can also share resources to help cover expenses. The Air Canada Foundation flew William from Saskatoon to Edmonton for the surgery. Without this program we would have had to drive him home afterwards. I’m still not sure how we would have buckled William into his car seat and made the six-hour trip.

Sharing the attention: This experience took a bigger toll on our six-year-old daughter, Carly, than we thought it would. She had to process this all in her own way. She had been acting out and more upset until recently. She also experienced some separation anxiety; she went for a play date and called me to come get  her less than an hour later. When we talked about it she said she was worried I wouldn’t come ever. It made me realize how important it is to slow down and really listen to her needs and concerns.

Taking care of yourself: As moms, it’s almost a natural reaction to put everyone else first. Now that William’s recovering, I’m trying to carve out more time for myself. Lack of sleep and missed meals can run you down fast, and your child needs you now more than ever.

Not even 30 to 40 years ago, we would have lost William at some point and not known why.  His heart and lungs would have eventually given up from the hole in his heart and pulmonary veins pumping to the wrong chamber of his heart.

William’s heart condition was repaired and I am grateful I live during a time where heart conditions like these can be detected and repaired. His enlarged heart chamber is going back to its original size and the patching of his heart was successful.

His pulmonary veins were rerouted with no concerns. He’ll continue to have follow-up appointments for a little while still. We are so grateful that his surgery went so well, recovery went great and that we have the support we have in our lives.

3 Responses

  1. Amy

    My 7 year old son had a hole repaired in his heart this past November. I can understand all the feelings you had leading up to the surgery and after. Modern medicine is a wonderful thing and I am so blessed that we were taken such good care of. My son is doing amazingly well and returned to playing hockey just a few months after his surgery.

  2. Patty

    My little sister, now 32 years old, was born with a dime-sized hole in her baby heart. She had to have the operation at 9 months old. I will be forever grateful to the HSF for all the years I’ve had with my baby sister. She was my best friend growing up.

  3. Marita Marks

    It’s been almost 50 years since I had the hole in my heart repaired. I am grateful to the Doctors who operated on me at a time when heart surgery on young patients was very rare. I am also thankful to my parents who instilled good nutrition and exercise into my life . Because of them, I am a healthy active person and continue to challenge myself. Good luck with your son’s recovery.

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