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The Day I Became a Heart Mom {1 in 100}

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May 13, 2016 Ashlea 14 Comments

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If you are a Heart Mom, you remember the day you became one.  Most likely you’ll remember the date as well. Was it during an ultrasound? Was it a fetal echo? Was it when your baby was born, or months or perhaps even years later?

The Day I Became a Heart Mom {1 in 100}

The Day I Became a Heart Mom {1 in 100}

I became a Heart Mom on January 22nd, 2007. I remember that day as if it were a movie. As if I could rewind and then hit pause and if only I could have hit fast forward.  He was exactly 3 months old and we thought he had bronchitis.

The most memorable thing about that day: when the doctor came into our son’s hospital room and asked to speak to his parents privately.

He was our first child.  I looked around thinking someone else was going to get up and walk out the door behind her.  I was waiting for my own mother or Paul’s mother to follow her. It took several moments (and everyone staring at me) for it to sink in that I was the parent.  That Paul and I were expected to follow her down the hall and into that little conference room.  That sterile conference room.

When your child is diagnosed with a severe health issue – one requiring a major intervention to save his or her life, no matter what the condition or diagnosis, there is a feeling of disassociation. Disbelief, anger perhaps.  The closest thing I can relate it to is an out of body experience.

For a while, I was convinced that she had it wrong.  That couldn’t be MY baby’s scans.  Not my boy.

She said “your son is going to need open heart surgery, and more than one.”  Just like that, and then pulled out a black and white diagram of a heart. So matter of fact.

That’s when Paul and I grasped each other’s hands under the table as we watched her draw arrows across it.  Showing us how the blood flows in and out of the heart, pumping through his body and why his was different, what they were going to do to fix it.  My own blood was pumping in my ears, so loudly that I couldn’t even hear what she was saying, let alone understand her medical jargon.

I was convinced she was wrong.

Even now, nine years later, as I sit and type, my nerves are heightened. My heart is racing, my hands are clammy. The thing is, this feeling never goes away.  Not ever.  Once you receive that earth shattering news, no matter whether it is heart related, or neurologically related or the dreaded “C” word, that fear will always be lurking in the back of your mind.  Always.

With our son’s specific condition, Truncus Arteriosus, Type II, that fear is heightened because we KNOW it will all come rushing back. We have ALWAYS known that he would need another surgery, it is a waiting game. Every time a cardiology checkup rolls around I feel like they are playing Russian Roulette with my son’s life. Logically I know this is not true. It doesn’t stop the fear though.

There are some heart conditions that can be fixed with just one surgery. Then, there are other, more complex heart conditions that will require surgery after surgery after surgery.  Who knows how many each child will need.  I will tell you from one heart mom to another, I am jealous. I know that I shouldn’t be, but I am.  I am envious of the millions of parents that will never know what it is like to sit in that sterile conference room.

He is nine years old and has had three open heart surgeries, the most recent being in August of 2015.  You can read the progression of his surgery as I posted about it here. I hope you’ll share with your friends that also have children with medical or special needs.

To my mind, it doesn’t really matter what issue it is, we belong to some sort of club.  The fear is the same. The grief is the same. The worry is the same.  We are not alone.

What do you say to a friend that has a child recently diagnosed?  Nothing.  Just give lots of hugs and pass the tissues, and offer your shoulder and your ear.

Note: I came to love my son’s first cardiologist as time went on, she has since retired and I hope she is having a fantastic retirement.

The Day I Became a Heart Mom {1 in 100}

Heart, Our CHD Journey becoming a heart mom, CHD, heart mom

Comments

  1. Karen Cox says

    August 22, 2020 at 10:12 am

    I became a heart mom 6 days after my third child was born. That was back in 1998. She came home after birth and was just fine for 5 days, but stopped eating (late at night, of course) and I didn’t understand what was happening. She didn’t have a fever or a cough, wasn’t fussy much - I mean, nothing made sense! Turns out she had an aortic coarctation and she was spending all her time breathing calmly to keep her oxygen sat up. I remember, after she was in the hospital in an unfamiliar city, and had already had her first surgery, my little family and I had gone to walk around a mall (during non-visiting hours at the hospital), and I was in such a daze. Everything was so surreal. Just 9 days before, I had been a pregnant mommy, and then there I was, walking around without her, and nobody who saw me knew that my little baby was in the PICU, naked on a baby hospital bed with a heat lamp to regulate her temperature, on a ventilator and with a feeding tube and an IV line stuck in her scalp. Yep. Remember that feeling like it was last month, and it was nearly 22 years ago. (She is fine today, btw. She also had two large VSDs and a bicuspid valve. She had two more surgeries and many heart caths, but has no restrictions, praise the Lord.)
    Reply
  2. Kris says

    September 27, 2019 at 9:57 pm

    I am a heart mamma, my baby girl was diagnosed at 32 hours old. We had no idea until she turned blue and stopped eating. I thought my heart had broken when they told us. She had all three of her heart surgeries before the age of 1. And we know there are more down the line. She is now 7, and she wants your heart surgery doll, I think so she can explain to others what the scars on her chest and tummy are. It can be used as an example so they understand. Thank you for posting your story. They are stronger than anyone ever gave them credit for. {1 in 100}
    Reply
  3. Deni says

    November 5, 2018 at 6:19 am

    I am a heart grandma! My oldest grandson (he is now 11) was born with Endocardio fibroelastosis and Hypoplastic Left Heart Syndrome. He has had 3 major open heart surgeries along with many heart caths and stent stretching and replacements. He will eventually need a heart transplant. I read your stories with tears running down my face. Thank you for sharing. It's a tough road with many bumps but we do it with love.
    Reply
  4. Amanda Blackstock says

    June 3, 2018 at 6:07 pm

    My oldest son had to have brain surgery at 3 months old. Fluid was accumulating in his head and his brain was compressed down to HALF the size. That MRI will haunt me forever. I know exactly how you feel about how calm and matter of fact the doctors can be. They told me if my son survived the surgery, he'd be a vegetable. He'd never feed himself, talk, walk. And they said it in the same tone as if they were ordering coffee or telling me the sky was blue. Once he was out of surgery and we were waiting for an update, a different doctor walked passed us and said "we just pulled him out a half hour seizure. He should be up in a few hours." and walked away. Again, like saying "hey, the sky is blue, see ya." It's been 8 years. My son has NO problems. He survived and thrived. My heart is with you. I hope everything remains well with your son!
    Reply
  5. Tara Milligan says

    May 27, 2016 at 7:38 pm

    We joined when my fourth baby was 5 days old. We found out about his CHD and hours later he was in surgery. It was exactly like you said, like an out of body experience, the whole time we were in the hospital I felt like I was watching it happen to someone else. After we got home my husband and I would stare at him sleeping and say "did that seriously happen?", it just felt so strange and took so long for us to process this new normal.
    Reply
    • Ashlea - The Diva says

      May 28, 2016 at 10:23 am

      YES! I think that sometimes also. Even after his most recent surgery (2015) I found myself wondering if it actually happened.
      Reply
  6. Polly says

    May 13, 2016 at 11:29 pm

    I joined at 2 days old. Only there was no table just a corner in the nursery on the 5th floor. 3 chairs and that notepad with the diagram of the heart, and open heart surgery before she is one year old. I LOVE Dr. B still, she gave us just enough to process what was going on, with a I will see you in the office later this week. It was Sunday, and she had worked us into her NICU rounds before heading home. In that moment all I wanted was my Mom... Funny how in the worst moments of our lives that's who we want! I still cry thinking about that day just a bit past noon. Now Robert was a different feeling. His was the " NO NO NO!!! Not both of them!!!!!" Kind of feeling. Dr. B and I knew each other well by then so April 14th, (my birthday no less) We got the yep him too news. But having all the jargon down it was less scary and more devastating. I been there and done that already, and was crushed that I had a normal no murmur kiddo for almost 48 hours, and then it happened again. My greatest anxiety comes from not the Cardiologist office so much as Downtown KC. Even driving by on the Highway with no stops sends my stress levels sky high. Really hard to enjoy crown center anymore.
    Reply
  7. Laura H. says

    May 13, 2016 at 6:01 pm

    I joined the day my daughter was born. She has Amniotic Band Syndrome it is on both hands and feet. She has had many surgeries and many more to come. This year she had surgery March 15, 2016 the day before her birthday and missed out on spring break. You perfectly described the out of body experience. I remember the doctor coming and talking with me but I was in so much shock I seen his lips move but did not hear anything coming out. Shriner's has been a blessing to my family.
    Reply
  8. Daina B. says

    May 13, 2016 at 5:00 pm

    I joined this club when my daughter was 7, she then joined with her first and second born. Life is precious and I am forever thankful that God chose my husband and I and now my daughter and her husband to care for these miracles. We learned at young ages, for which I am thankful, that life is precious beyond our wildest dreams. I have always told my daughter the finest steel is forged from the hottest fire. I wish you and yours the Peace and love of Christ. Our prayers are with you.
    Reply

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Welcome!

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Hi! I’m Ashlea, the Kansas mom, and wife, that runs this crochet, food, and heart (CHD) blog.  I am a frugal, yarn loving crochet addict that enjoys good food and fine wine – or an occasional whiskey. 😉 Read more about me here and see my favorite Amazon products here.

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