My Baby Has a VSD (Ventricular Septal Defect)

June 15, 2017

Our twins Mia and Luna were born near a month premature at 2.7 kgs (5.9 lbs) (Read their birth story here). On the second day of life during a physical examination, our babies’ physician heard a ‘murmur’ in Luna’s heart. She was diagnosed with  a Ventricular Septal Defect (VSD). My heart is carrying a heavy burden since.

What a VSD is?

Honestly, I was avoiding this topic all this time. I even told my husband not to tell me the name of it, not to stress myself even more. From Google (I promise, I was searching just a proper definition), VSD is a hole in the wall separating the two lower chambers of the heart. Normally, the left side of the heart only pumps blood to the body, and the heart’s right side only pumps blood to lungs. In a child with VSD, blood can travel across the hole from the left pumping chamber (left ventricle) to the right pumping chamber (right ventricle) and out into the lung arteries. If the VSD is large, the extra blood being pumped into the lung arteries makes the heart and lungs work harder and the lungs can become congested. (www.heart.org)

What are the symptoms of a ventricular septal defect?

A VSD permits extra blood to pass from the left ventricle through to the right side of the heart, and the right ventricle and lungs become overworked as a result. The larger the opening, the greater the amount of blood that passes through and overloads the right ventricle and lungs. Symptoms that Luna has include rapid and heavy breathing, fatigue and tiring while feeding. Probably we wouldn’t even notice these symptoms if her twin sister Mia wouldn’t grow more rapidly. They were born with completely identical weight and now, at almost three months they have a 600g (1.3 lbs) big difference.

One week ago we went to the pediatric cardiology department at Hôpital Necker in Paris for the pre-op appointment for Luna’s surgery. It was focused on the echocardiogram (ultrasound of the heart), blood tests and the most important- we met the surgeon who will do an open heart surgery to our baby. He explained what would happen during surgery as well as the risks. We were told that this surgery is an ‘easy’ one. On a scale from 1 to 11, it’s 5. I thought about writing about the details of the surgery but it may be disturbing for some of you.

The synopsis is that it’s an open heart surgery to repair a large hole in the heart. Her heart will be stopped and a machine will function as her heart and lungs. That what terrifies me the most as a mother. Even a talk with one of the best surgeons in Europe couldn’t comfort me and relieve my pain. Although I was assured that Luna will be in highly capable hands, the fact that a scalpel will touch my baby girl’s chest and her tiny heart will be stopped is breaking my heart in pieces. I’m angry. I’m terrified. 

I have no idea how I will survive the day of the surgery. Why my baby? Why us? I won’t even be able to hold her in my arms after this nightmare will be finished. She will be all alone, drugged and hooked up to multiple tubes, drains, and machines. But I have no doubt she will be fine. As our cardiologist said: “You’re strong, but she is stronger,” and I truly believe in that. This will be the biggest battle in her, no, in our lives. I believe in her. Maybe one day she will be proud of her scar. Me, I will. I’m so proud of my tiny fighter. No doubts, she will be victorious!

I’m asking you for support. We need it more than ever. If you have experienced this in your family, please share your experience with us. Maybe there’s something we should know. Thank you!

14 Comments

  • Reply MaryNicknames June 15, 2017 at 6:11 pm

    Oh Jolanta, I’m so sorry to read this! 🙁 You’ve been holding all this inside all this time and yet you’ve been capable all this time to continue the house hunting, to take care of the everyday needs and of your other two little ladies as well as Luna. So your doctor is right: you’re strong and you believe it’s gonna be the very best, ’cause you’re looking out for a future with the three princesses. And I’ve no doubt Luna is so strong too -and she’ll grow up as nice and well as Anya and Mia. Only that she will be the first one to carry a tiny scar, the scar of a warrior and a survivor!
    My mother, who was a teacher, had kids who had gone through that procedure as babies too – and they were as vivacious as anyone. I’m sure you’ll hear wonderful reassuring stories thanks to Internet 🙂
    I’ll be sending you the best of vibes these days! Please keep us posted. Hugs and kisses, María 🙂

    • Reply Jolanta June 24, 2017 at 6:03 pm

      I started blogging to share my experience and somehow to help people. But in the end, I receive more than I give. Thank you for this, Mariá! i appreciate it.

  • Reply Tiffanie June 15, 2017 at 7:57 pm

    I love you so much Jolanta. And I especially love what the doctor said, “You are strong, but she is stronger!” That is so true. Praying and sending my love to your family and Luna. Thank you for sharing this. I know it is hard to just open up to the world, but because of you, many people can find comfort in knowing that seeing how strong and beautiful your family is through it all…that they can be too! Life happens, but sometimes, when it happens to us, we feel all alone. So thank you for sharing Jolanta!

    • Reply Jolanta June 24, 2017 at 6:02 pm

      Tiffanie, you’re the most beautiful person I ever ‘met’, honestly! Thank you so much! I’m forever grateful for your support and kindness!

  • Reply FrenchyGoLucky June 15, 2017 at 8:57 pm

    Sending Luna tons of love!! ❤️
    I was watching a video just the other day of Jimmy Kimmel telling the story of his newborn who like Luna was diagnosed with VSD! If you have not seen the video you may want to have a look (available on YouTube). It made me cry because I just had a baby recently so it will probably be even more emotional for you to watch!
    Sending tons of love and prayers to your beautiful Family!! ❤️❤️❤️

    • Reply Jolanta June 24, 2017 at 5:59 pm

      Thank you so much! It’s very kind of you. I’ll definitely watch it when this nightmare will be finished. Right now I’m too emotional even to think about it.

  • Reply Lyana @simply_mamma June 16, 2017 at 12:51 am

    Oh Jolanta , sending hugs your way, this is by far the hardest time for the mother but I truly believe that everything will be ok for little Luna and she will grow into beautiful young lady to make her parents proud ♥️

    • Reply Jolanta June 24, 2017 at 5:58 pm

      Thank you, Lyana, for the support! You’re very kind, as always. Sending love to your beautiful family!

  • Reply Nicolle June 24, 2017 at 5:49 pm

    I just read this. I’m so sorry you have to go through this. I don’t know how I would handle it. My husband has had 2 open heart surgeries and it was heart wrenching to wait. To have it be a little baby…. God bless and prayers for everyone. And babies are strong!!!

    • Reply Jolanta June 24, 2017 at 5:56 pm

      Thank you so much, Nicolle! Hope your husband is fine. I believe that the hardest part will be to wait for it to be finished. I’ve no idea how I’ll survive that day, but I do my best to stay positive and optimistic about all this. Again, thank you for your support! It means a lot to me ❤️

  • Reply Ando July 18, 2017 at 8:57 am

    Hi Jolanta !

    It’s not an easy experience and it can be pretty scary and really stressful .I know that because my baby has VSD too. . She had her heart catheter surgery in january and everything went well . I hope with all my heart that it will be fine for your baby and for all the family. xxx

    • Reply Jolanta July 18, 2017 at 8:58 am

      Thank you so much! The surgery went well and now she’s more happy than ever, and so are we 🙂

  • Reply Magda July 29, 2017 at 11:43 am

    Oh thank goodness! In my mommy-brain fog, I kept checking your blog for updates on the surgery, and finally today I read through the comments to see if there were any news – my heart goes out to you and am so happy for your family that all went well! Sending all of you wishes of health and happiness!

    • Reply Jolanta July 29, 2017 at 12:13 pm

      Thank you so much, Magda! It means a lot to us! Luna is completely fine now, she gains weight very rapidly and is more smiley than ever. We are very proud of her, of all of us 🙂

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