A Broken Heart {#FTSF}

We all have amazing bodies… I can tell you about giving birth to four children, losing and gaining weight, withstanding sports injuries, and even the fact that most of my scars are barely visible. But I’m not.

Today, I’m going to share a story of one beautiful child’s body.

This story of a newborn… His mom’s labor was uneventful… as uneventful as a labor can be, until a fever kicked in and the risk to having a VBAC was putting both of them at risk. After contemplation and discussion, a second cesarean was performed on the mom and a beautiful baby boy popped out.

This was no ordinary baby boy. This boy had hypoplastic left heart syndrome, which means he was born with an underdeveloped left side of the heart, basically the left side is non-existent.

hypoplasticleftheart

Luckily the mother knew about this condition, and was prepared. She was prepared as you could be knowing that her child would have open heart surgery on day seven of life. The mother was told that her child would need three surgeries, each of which have a 25% fatality rate, throughout his life. He would not play sports, he would likely not be an active child. Even if the surgeries were a success, a host of other related problems could occur:

  • Blockage of the artificial shunt
  • Serious infections
  • Chronic diarrhea (from a disease called protein-losing enteropathy)
  • Fluid in the abdomen (ascites) and in the lungs (pleural effusion)
  • Heart failure
  • Irregular, fast heart rhythms (arrhythmias)
  • Strokes and other nervous system complications
  • Sudden death

This baby spent his life in the NICU (newborn intensive care unit), being cared for by nurses, and being visited by his own parents.

The early days

As planned, on day seven, his skin and rib cage were opened from neck to belly button in order to access the heart. The surgery was seven hours… and his parents patiently waited in another room. His broken heart was repaired but not whole.

The surgery was a success! A stint was placed in his heart so that the right side would be able to do the functions of both sides. He looked peaceful in his bed, with his chest pulled apart, a piece of plastic covering the opened area, as the swelling decreased. He was mostly sedated and on a breathing machine, but otherwise did not struggle. All of this was normal.

post op

As the days and weeks passed, his rib cage fused, the staples holding the two pieces together could be removed and the skin sewn back together.

He was all one again… yet he was more than one. He was my son. He lived a total of seven weeks, but his body endured more than most do in a lifetime.

the final days

Read more HERE.

This is the first year that I did not remember him on the day of his passing. I don’t yet know how I feel about that. I miss him dearly and wish I could hold him one last time.

Remembering Alexander ~ June 1, 2007-July 24, 2007

This has been another edition of Finish the Sentence Friday.

FTSF

28 thoughts on “A Broken Heart {#FTSF}”

  1. His little body did so very much and I thank you, huge, for sharing more of your son's story here tonight. I know you've spoken about him before but this is the most that I can personally recall you sharing. I'm sure it was hard and hope so much that it was also freeing and empowering because He Was HERE, and your body brought him to this world, and that is beautiful. I'm also very very very sorry for your loss. No mother should have to say goodbye, ever, and most especially well, there really is no "most especially," I guess… hugs, though. I send those.

  2. I'm very sorry for your loss. Letting go a baby must be eternally hard.
    July 24 is my anniversary, so I may think of him in the years to come.

  3. Talk about a lump in my throat. What a beautiful, poignant and very sad story. He was so beautiful and spent his all too short time here on earth, treasured and loved. I'm so sorry.

  4. I enjoyed reading this post. I realize that the topic is very precious to you, but I appreciated the way that you built up to letting us know that this beautiful baby was your son. I'll hold you in my thoughts today.

    1. Thank you. I'm working on my story telling writing style, so it helps to be able to see how effective I am. He's always in my heart.

  5. Oh momma! You poor thing. I cannot even imagine. I don't even know what to write, but my heart hurts for you. SO brave – both the sweet, sweet baby and his amazing mother.

    1. Thank you. I love to remember my little Alexander. Now, looking at my Butterfly, she reminds me so much of him.

  6. I cannot imagine the pain you and your family must have gone through, and I'm so, so sorry for your loss. Seeing our little ones suffer is always the worst. We've almost lost our first daughter at 13 months, and I will never forget the fear. Your little guy was a fighter, and he'll always live on in your hearts!

    1. It's definitely something that I don't know if I'd have the strength to repeat. He was such a fighter. He was a strong little boy who endured a lot ! Thank you.

  7. tamaralikecamera

    I had this up to comment on it for two days now.
    It's a beautiful post.
    I'm so sorry about your beautiful son, always in your heart.

  8. April, I did know the story from you, but reading it again here just made me want to cry. I seriously am so very sorry for your loss and all you had to endure from this. I know and trust you are strong woman, but still my heart goes out to you always on this. Hugs and thank you always for being so open and sharing about this.

  9. May the arms who embraced him entering heaven also embrace you with peace.

    "This is the first year that I did not remember him on the day of his passing. I don’t yet know how I feel about that. I miss him dearly and wish I could hold him one last time."

    I'm sure you remember him every day, but it's ok to live the life you still have yet to live. He would want you to. I've always believed it takes 7 years for the soul to heal when it's broken (based on Kabbalah… 7 years bad luck superstition with mirrors), and that grief always tore the soul somewhere. It really took me a good 7 years to make peace with the fact that my dad is gone. I still miss him dearly, but I'm at more peace now about it than I ever was. I noticed the same thing with my friend when she lost her child. But we all grieve differently. I was the type to run away from everything and my friend was the type to push people away. Some of us internalize it more than others. It's just that we are all so unique, we respond to loss in the same unique ways. I just wanted to say there is no, "You have to grieve this way" about it. There is no manual on it. There are no expectations. If you cry, then you cry, but if you don't, then you don't. It doesn't matter what you do as long as you are doing what feels natural to you. While I believe it takes about 7 years to make peace with something like that, some people mature faster than others, and if you make peace with it early, don't beat yourself up over it. That's an amazing accomplishment. I also believe, the more at peace you are about losing someone, the more at peace they are in rest.

    1. Thank you for your kind words. On one hand, I’m happy that I didn’t think about the day he died, but on the other hand, I feel like he’s slipping away.

  10. Oh my. You went through such a lot. I am so sorry your son didn't make it. I wrote about when my baby was in NICU for this hop too. My daughter had some serious illnesses, but she's almost 15 now. Yet I still remember that time, how it felt and also how it felt when another baby in the room was very ill. It must have been so hard for you, and you are brave to share this.
    I am glad that you love to remember him and you are brave to share his story. His life was precious.

    1. Thank you. I've thankfully been able to find the blessings behind the tragedy. I would never have my life that I have now if he had survived. He taught me so much in his short life.

  11. Brittnei Washington

    April, this is the first time I'm reading about what happened. I'm so sorry for your loss. Words can't even describe what I know you all must have been feeling and still do in your memory of him. I'm happy that you were able to hold him and be with him even for that short time. What a precious baby he was. Thank you for feeling brave enough to share your story here. It is truly inspiring and amazing.

    1. Oh thank you. It as very hard for me to physically let him go. I wanted to keep him forever. Years later, I see how life is precious and how I want to protect what I have with my kids as much as possible.

  12. Sending so much love. I want to thank you for generously sharing that story- you have touched all of us who have read it, and I hope you can feel the support and caring coming your way through all of our words.

    1. More than you know. I hear and am so grateful for everyone's comments. When I have the opportunity to express myself here, I am overwhelmed with the love and support from all.

    1. Thank you for stopping by to read my story. I think he was really tired by then. He seemed worn for such a little person.

    1. Thank you! It's very refreshing to share his story. I feel like I'm keeping him alive even though he's not here. I love having him in my heart. Thank you for stopping by!

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