Wednesday, March 9, 2011


I was born different.  I guess unique would probably be the better term, but let's just say I wasn't your average baby.  I was a very unhappy baby, pale, generally clammy and fidgety.  More so than the average newborn.  It wasn't until my mom took me to a well-check at our new pediatrician's office shortly after we moved from North Carolina to Alabama that we discovered there was something wrong.  The doctor could barely feel a pulse in my legs.  Blood wasn't flowing correctly.  After some tests done in Birmingham it was confirmed that I had a hole in my heart and a coarctation of my aorta, which is a narrowing, making the blood flow more restricted than your normal artery.  My parents had no choice.  I needed surgery, at four months old.  And I needed it quickly because time was of the essence.

They scheduled the surgery to be done by a Dr. John Kirklin, Sr., who I now know was a trailblazer in heart surgery among infants with my condition.  Being a Catholic family, and I was a young baby, they needed to have me baptized before the surgery.  I was baptized the week of my surgery in a priest's office.  My grandparents and my god parents couldn't make it because there wasn't enough time.  We left soon after that for Birmingham.

My mother has told me one of the hardest things she has ever had to do was hand me over to a nurse in an elevator at the University of Alabama Birmingham hospital.  She had to let me go and couldn't come with me.  She couldn't take the surgery for me.  She had to let her four month old baby go into a situation where she may not come out alive.  Now that I'm older and wanting to be a mother myself I couldn't imagine the kind of strength that took and the kind of pain that inflicted on her. 

I couldn't tell you the details of what they did in that surgery.   All I know was that Dr. Kirklin worked a miracle that day.  When my parents came to see me in the recovery room, they found an active baby, her arm in a splint where the IV was placed, using said arm to hit a mobile above her crib.  After that, I was a completely different baby.  Happy, healthy, active.  It was a miracle. 

My whole life, I've known that I've had this congenital heart defect.  It's always been a given.  It's always entailed trips to the hospital every other year to check on the status of where my repair was done.  I've had my scares, too.  As an adolescent, it was feared that a growth spurt would cause problems.  Luckily for me, I never really  had one.  (Hence the 5'1" height being a blessing).  I underwent a stress test in 5th grade to determine if I needed surgery.  I passed with flying colors.

In college, I started doing MRI tests to check for aneurysms due to a leak in my aortic valve.  I have had about five of those, one of them being two weeks ago.  I've had three CAT scans and I can't even count how many EKGs and echo cardiograms.  Every time I have one of these big tests, I worry and worry some more, but I do it.  Because I have to.  And each time I do it, I think of my Grandma, who had so many heart problems herself.  She was so strong, so I should be as strong as her. 

Last March I even had to work a holter monitor for 30 days due to my heart racing and high blood pressure.  I had this pager-like device clipped to my clothes and two stickers with wires hooked to me like I was jump starting a car or something.  It was a pain, but I did it. 

I have been told over and over again that I'm lucky.  Most children who had my surgery have to have repairs done within three years of the surgery.  Here I am, 30 years later, and I haven't had surgery since.  That, in and of itself, is amazing.  If Dr. Kirklin were alive today, I would thank him in person if I could.  Because he truly worked a miracle. 

Having a heart condition has always just been a fact of life for me.  I've never liked having it be something that held me back.  I have a heart condition and asthma, but I exercise daily.  I push myself, almost too hard sometimes, but I want to be like everyone else.  I want to be tough.  Normal.  This leads to me having asthma attacks in front of my trainer and being scolded by her and T in the same night, but....I can't help it.  I don't want to seem weak.   I'm as strong as the rest of them, right?

A few weeks ago, T and I went for a routine exam with the cardiologist, expecting nothing out of the ordinary.  We want kids, so I figure "why not ask about that now?"  I was sure he'd say there would be no problem.  But no, that's not what he said.   He, instead, referred me to another specialist to do some testing to see if I require surgery and to also see the risks of me having children.   Because, according to research with patients like me, having children can be risky.  Not impossible, but there's a risk the baby could be small.  And there's a risk that it could be fatal.  To both me and my child. 
This news crushed me.  I know it's not a definite "no" but even having a possibility of a no or the possibility of that risk just took me down.  There is nothing in the world I want more than to be a mother.  I love my nieces and nephews as if they were my own, but I want children with T, children of our own.   And now we might have to face a decision that I don't think either of us was prepared to face.

I've been all over the place about it.  I've had my moments where I just shut down, keep working and don't think about it.  Then all of a sudden I do think about it, and I'm either overcome with a huge wave of sadness or anger.  There are so many mothers out there, mothers like in my past cases through DCS, who don't deserve children, don't treat them as if they love them, and they can have them so easily.  I've known so many people who have miscarried or have been unable to have children, and all of these people are so wonderful, so loving, so giving, and so deserving of a child.  What's fair in all of that? 

I am not going to lie to all of you out there.  I'm nervous about tomorrow's appointment.  That is why I'm posting this today, because I needed to get this out for some reason, but I'm afraid I'll lose my nerve.  Things could very well be just fine.  We could go to the doctor and be told we're OK, which is what I hope, but there are a whole bunch of answers we could receive tomorrow.  It's hard to say, and I can't sit here and predict them.  It isn't to say I haven't tried. 

I'm not sure why I've just unloaded my life story here on a blog post.  I'm normally pretty closed about personal items, but I don't know...this just felt cathartic.  I needed to get it out. 

T and I appreciate all of the kind words and support you  have all given.  It truly has been humbling to see how many people out there care for us and are thinking of us, even people we have never even met. 

Hopefully I'll be back with good news.  Until then, I'm letting go of this one and letting God take it for me.


  1. Oh, Nain... this post made me cry!
    I'm praying every night for you.
    {big hugs}

  2. {{{HUGS}}}
    Here's to getting good news tomorrow! You are in my prayers. xoxo

  3. What an amazing doctor and what an inspiring story. Thank you for sharing part of your life with us! I know the feeling of life being unfair, in so many respects. I have one beautiful daughter who is a true blessing from God. I have at least four other babies waiting to meet me in heaven. My girl was the only one I was able to carry to term, the others left my life but not my heart before they were 5 months into gestation. I didn't want a large family but I never would have voluntarily released my babies.

    I am praying that your appointment tomorrow gives you good news. I'm sure there will be cautionary statements in an effort at full disclosure. But overall I am praying for good news.

    Godspeed Nain!

  4. You are so brave, and I commend you for writing this story and sharing it with us. I am inspired and humbled by your story. Stay positive, and know my prayers (and those of so many more) are there with you tomorrow.

  5. Good luck in the appointment tomorrow. I can't imagine how you're feeling (and how you've felt for your whole life) but I definitely have some sympathy pains! ** HUG **

  6. Hoping that you get news you can live with and be happy about. Good luck tomorrow.

  7. I want to hear good news on Friday for you. Sending positive vibes.

  8. I will definitely continue to send my thoughts and prayers and positive energy your way. I hope everything goes well.

    You're very brave for sharing your story on here. We all care about you and are here for you.

    Good luck.

  9. I have to echo the sentiment that this was very brave of you to share. I know it couldn't have been easy to write, but I'm glad to know more about you and I hope that it provided some catharsis.

    I will continue to keep you in my thoughts, Nain. Hang in there, and here's hoping for some good news! <3333

  10. I would give my right leg to give you a serious hug right now!!!! You are one of the blogger I know who I would actually pray for. I don't pray for myself...but I will be doing it for you tonight mama! *millions of hugs*

  11. I Truly believe you are going to get good news tomorrow! Praying for a nice healthy baby in your near future!

  12. I'm thinking of you lady. I just can't believe you have been through so much... my heart is aching for you. And I am sending out all of the positive energy I can your way!

  13. Oh, Nain. BIG HUG!!!!!!! I'll be praying for you. As someone who also wants a child more than anything, I agree that life can be so unfair. I hope some of its beauty and fairness comes your way at your appointment.

  14. Nain you are the miracle! Having children is a blessing, but they're a blessing no matter how they get here. You're going to be a great mom some day. All you can do right now is let go and let God.


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