Two Years Later: Life After Open-Heart Surgery

Texas Children's heart surgery patient Zeyd BastasWow — what a difference a year makes! About a year ago, I wrote a series of blog posts about my son’s life-threatening congenital heart defect, going into severe heart failure, and undergoing open-heart surgery with Dr. Jeffrey Heinle at Texas Children’s Hospital when he was only 26-days old.

Talk about a life-changing, traumatic and scary time in my life.

I discussed the fears of finding such a serious heart condition and seeing my son go through surgery and recovery. I wrote about the amazing roller coaster of emotions that I felt, especially on the days when I would spend so much time remembering our hospital stay, how incredibly grateful I was, and thinking about what could have been had we not received the amazing care that we did. I would make myself almost sick on the days we went in for check-ups with our cardiologist, Dr. Shannon Rivenes, fearing that she would find that his heart was not improving or growing as it should and that we would be sent in for another surgery. That fear turned into stress and anxiety about my son’s health and prognosis, and it became overwhelming at times.

At the time, I couldn’t seem to surrender those emotions and accept that I could not change the way his heart was.

Texas Children's heart survivor Zeyd BastasToday, almost 2 years after Texas Children’s Hospital saved my son’s life, I feel like a different person.

I really do. Every day with Zeyd is a good day. Zeyd is so happy, full of life, energetic and smart. He is developmentally on track and has had no setbacks because of his heart condition. You would never guess he was born with a heart condition unless you saw the scar on his chest. Zeyd loves to swim, ride his bike, push his lawnmower around the house, color and play with anything that has wheels and an engine! I could not be more amazed and proud of him and feel so blessed to be his mom.

Life since his surgery started out with me getting easily panicked about his breathing, his sweating, his level of activity, staying away from germs, as well as all of the normal things that worry every new parent. Luckily though, things really have gotten better and easier. For me, the first year post-surgery was much different than his second year post-surgery.

Heart patient Zeyd Bastas having fun at homeTo other parents reading this, was there a time after learning of a health condition when you realized, ‘I can finally worry a little less now and it is okay?’

Our cardiologist always tells me that if Zeyd is tired, he will rest. He can listen to his own body and I can observe his actions instead of constantly obsessing over every little thing. I can let Zeyd be a regular kid. I can let him sweat and run and when he does breathe fast — it is OK. Zeyd may need another surgery because he still has problems with his aorta, aortic valve and mitral valve, but now I just try to avoid the unnecessary worry. I should save it for a time when I really do need to worry and that time may come soon, but thankfully, it is not right now.

To any other parents out there who wondering if that fear and worry inside of them is always going to be there, in my experience — it gets better! I think our bodies naturally develop ways to cope with what has been put into our lives, as difficult as it may be, we find a way to cope, to understand, and to accept the obstacles we face and that our children face.

As I have said before: To every single person involved in our care and in the care of other children, I hope that all of your families know that every minute you may spend away from them at work, you are allowing your patients (us) to spend a lifetime with our loved ones, and I am sorry for that compromise, but forever grateful for your help.

Zeyd Bastas, Texas Children's heart surgery patient, 2 years laterThank you Texas Children’s, thank you for everything.

About Talia Bastas, Mother of Patient

I am the mother of a beautiful young boy named Zeyd.

My introduction into the world of parenthood was turned upside down when I found out Zeyd needed heart surgery as a baby. Thanks to successful medical intervention at Texas Children's Hospital, I am able to share Zeyd's story today.

Posted in Guest Post, Heart, Motherhood, Parenting, Surgery

7 Responses to Two Years Later: Life After Open-Heart Surgery

  1. Maribeth Stone says:

    What a wonderful story. My son also had Open Heart Surgery. He was 8 days old. It was very stressful. I will say that reading all of your stories has helped me a little. I am still in the first year (9 months) and I still worry all the time. 24/7… So, it is good to hear that that fades some.. Thanks for your stories and sharing pictures.. He is adorable..
    I too owe everything to Texas Children’s. My son’s Surgeon was Dr. McKenzie. I LOVED him.. We did see Dr. Heinle a lot as well and he is also wonderful. I think really I saw him during rounds more than anyone else. To be honest all the Heart Surgeions there are fabulous, as well as all the Doctors & Nurses. The nurses in the CICU were what helped me make it day by day.

    Good luck with your son.. I wish him the best. My son Thomas may have to have more surgery as well. He has basically the same as Zeyd. So I will add Zeyd to my nightly prayers.

    Thanks for all your blogs, and know they do help…

    Maribeth Stone

    • Hi Maribeth! Thank you so much for taking the time to leave such a nice comment. That is really nice of you. I am so grateful to be able to live life without the constant state of worry and stress which I was in when Zeyd was younger and I am really confident your worry will lessen with time. I think if and when Zeyd does need another surgery, I will probably go right back into fear-mode, but that really is natural to feel as a parent. It is that amazing reassurance we get with the passing of time, positive trips to the cardiologist, and good news from the echocardiograms which allow all of us parents to start to feel more ‘normal’ :) Thank you for your prayers and I will also include Thomas in mine, he will continue do amazingly!

  2. Margaret Hairston says:

    Dear Talia and other young mothers,
    I always save my TCH emails to “read later” and somehow “later” never quite gets here! Today, however, was different. I opened the email and read your update. I have good news for you!

    With ultimate thanksgiving, I tell you the worry does subside, but never completely goes away. I will also tell you that the absolute joy of watching your child grow takes the place where worry has been!

    My son had open heart surgery 16 1/2 years ago and he is now a strong, active and energetic college freshman! Davis swam and played the very rigorous game of water polo for four years at a 5A high school while maintaining high grades in honors classes. He runs, bikes and has completed three triathlons. He coaches swimming in the summers and delights in making up stories to tell the young swimmers about how he came to have the long scar on his chest.

    Rather than fret, I spend my time thanking God for every race finished and every accomplishment achieved. I still wonder and worry, but not nearly as much as I did 19 years ago. Time allows you to do that. You’ll get there, too!

    Davis definitely knows his own body and knows when it’s time to slow down a bit. He is careful with his diet and is fully aware that his heart is special. Your children will do the same.

    I wish only the best for you and for your children. Know that they are in the hands of the “world’s best” at Texas Children’s. The treatment, care, concern and love given are extraordinary.

    Hug your children and tell them daily that you love them!

    Margaret

    • Hi Margaret,
      I really thank you for taking the time to leave such a nice, uplifting comment. I think all of us parents in situations as my own truly appreciate a story of hope, and it gives me hope to hear about how great your son is doing and especially how active he is. It is also nice to know that he seems to make even better decisions about his health and level of activity BECAUSE of his heart condition. I hope my son will put extra emphasis on staying healthy and active like yours does. It is great to know the worry will continue to get even better with the passing of years, but of course–we will always be grateful and thankful ;) Thank you, Talia

  3. AMY Parker says:

    The story of my daughter, Amelia Claire is similar to Zeyd’s. She was diagnosed @ 2 months with AV canal. She has been through many surgeries and interestingly enough, Dr surgeon that has operated on her 3 times is now @ Texas Children’s (Dr. Forbess). That’s how I found your blog (looking for his e-mail). Anyway, Amelia Claire has had 5 or 6 open heart surgeries and several others for pacemaker issues and Coumadin issues. She is 12 now and is doing well and I just thought you might like to know someone who has done so well with the same defect.

    God bless,

    Amy
    aaaparkers@yahoo.com

    • Hi Amy! What an amazing story you have to go through years of surgeries and other health issues with a pacemaker and Coumadin. Amelia Claire sounds like quite a tough supergirl and you, as her mother must be a superwoman to be able to stay strong for her through everything. I am so uplifted when I hear of another child with AV Canal Defect who is doing so well and I thank you so much for taking the time to share your story. May you and your family be blessed with health and happiness always, thank you so much! ~Talia

  4. Susan says:

    Thank you for the wonderful story about your son. My daughter just had open heart surgery and it was the scariest thing that has ever happened to me. Luckily she is doing great, one week after surgery, and I am so blessed to have her in my life. You are right, it does get easier, sometimes the hardest part happens before the surgery even begins.

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