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Tag: chd

  • I Feel Bitter And Jealous That My Baby Is Not Healthy

    I posted this in response to someone feeling a certain way about other’s healthy kids & their heart warrior & their own heathy kids, but I wanted to share it to see if anyone else feels/felt this way because I honestly feel so guilty about it.

    I can’t wait to NOT feel this way but I can’t help it maybe I’m just not as good of a person as I thought so here goes.

    I feel like garbage for having these feelings but my husband & I tried so hard to get pregnant, it took so long & then to find out at 26 weeks our son has a complex CHD & will need the 3 stages of open heart surgery to reroute everything & then a transplant as a young adult.

    I’m now 29 weeks & can’t help but feel bitter & jealous when I see healthy babies, especially with people I know that weren’t trying to get pregnant/didn’t want to & weren’t ready & don’t even get me started on the mum’s I know who considered abortion or adoption for their healthy child I’m like WHY couldn’t I have a healthy baby!

    I did EVERYTHING “the right way” I went to school, I got a great career, I dated for a long time, then married, then bought a house & then & only then when I felt I could give my child everything it needed, everything I didn’t have as a kid myself, did I try to conceive.

    I feel guilty for feeling that way especially to my friends’ kids or even my cousin who did NOT want a baby, she continued to use drugs in her first trimester, hard ones. She considered abortion & adoption, she continues to smoke cigarettes. NO ONE supported her decision to keep her baby…but SHE gets a healthy baby?

    I know I sound so rude & judge-y but REALLY! I’m beyond jealous especially because I was the only one who encouraged her to clean up & do right by her baby after she made the decision to keep it. I stood behind her when no one else did because we are both pregnant right now, just a week apart… AND SO with all that we are going to face with our son before & after he is born, me having to relocate will most likely cost me my job & who knows if we will be able to keep our house on only my husband’s income & who knows if my husband’s employer won’t fire him because of all the time he will need off between surgeries & what not & who knows if our son will even live… when it rains it f*cking pours!!!

    I will love my child but I am sad he will not be healthy!

    Emailed in anonymously

  • Kadyn’s Story

    Hi my names Ailsa and this is a little story about my son Kadyn who has Bicuspid aortic valve stenosis.

    When I gave birth to Kadyn in 2009 he was a typical baby and I couldn’t have been happier.

    Around the age of 1 I noticed he was getting increasingly breathless, his hands were always cold and he was always loaded with the cold. After countless trips to the Dr and getting fobbed off with “oh it’s just viral and possibly asthma” one GP checked his pulse and seemed alarmed. He asked me if I was aware Kadyn had a heart murmur I was shocked as we had never been made aware of this. The GP checked his heart rate and said I had to take Kadyn immediately via ambulance to the children’s hospital.

    Panicking I went and after various tests, bloods ECG and echo’s we were taken to a small room with a box of tissues on the table.

    A consultant called Dr Knight greeted us and told us Kadyn was suffering from a condition called bicuspid aortic valve stenosis. My world completely crumbled around me I heard him talking but I was in a daze. I heard the words surgery catheters and open heart.

    We were given leaflets and assured that Kadyn for now didn’t need any intervention.

     Congenital heart disease affects 1-100 babies born in the UK and is more common than cancer. Kadyn’s condition means his aortic valve (the main valve) is thickened by muscle and causes the heart to work harder and faster than a healthy heart. The surgeons can stretch the valve to preserve this and stop the thickening before ultimately the valve will need completely replaced by a mechanical or pigs valve. This sadly doesn’t grow with the person and therefore surgery will be repeated as and when necessary.

     

    Kadyn leads a normal life he’s very active and is a typical 7yr old. However, our last visit in Dec 2016 our consultant seemed very worried as Kadyn’s stenosis is now classed as severe and it needs intervention.

    We were given 2 options of catheterisation where they stretch the valve through a balloon procedure through the groin or open heart. We chose the less invasive procedure however it does pose risks.

    As a mum my mind is completely blown by all of this there’s not a minute of the day I don’t worry about him. I’m terrified of this imminent surgery I fear for his life and what the future brings.

     All I know is CHD is real it’s horrible and it is nasty. However, it is always being advanced and the surgeons are angels. I fully trust my son’s consultant and I trust him literally with Kadyn’s life.