Hypoplastic Left Heart Syndrome ~ He never gave up so how could I?

hypoplastic-left-heart-syndrome-15-years-ago-today-our-story

Today my oldest son turns 15. This is a milestone for most kids. But for my Matthew, this is so much more. Some of you know his story, but for those of you who do not let me give you a brief history.  Matthew was born missing half is heart, a condition called Hypoplastic Left Heart Syndrome.  A word that when I first heard I could not even say. The doctor wrote it down on a piece of paper for me, with a rough sketch of what a normal heart looked like and what his looked like instead. I held that paper and just cried, the tears would not stop. He looked so perfect, how could he be so broken?

I did not know anything was wrong with him, till a few hours after he was born. One of the first miracles in Matthew’s journey is the fact that his pediatrician noticed the small signs that something was not right with him and pursued further testing. The pediatric cardiologist happened to be in the hospital that day too. She normally only came to our small town hospital once a month, but she was there that day. The two of them together discovered that Matthew had one of the worst heart defects, he was literally missing half his heart. Sadly the only other person I had ever know with this condition was our pediatricians daughter, she has passed  at 3 weeks old about a year before.

We were given three options. We could choose compassionate care, which meant we would hold him and love him until he passed away. This option would leave him free from any needles, tubes or surgery.  Second option was heart transplant. He would be intubated and in the hospital,  but most likely he would pass away before a heart would come available for him. Third option was surgery. A series of at least three open heart surgery’s where they would try to reroute the heart, they gave him about a 30% chance of making it through the first surgery.hypoplastic left heart syndrome, HLHS, echo Matthew

As I sat on my hospital bed holding this piece of paper, trying to make sense of it all I felt hopeless. I was suppose to be picking out what outfit to put him in to take him home. Instead I was trying to decide if he was going to die today, or possibly on an operating table.  As I looked at my baby, I could not imagine putting him through all that pain. Plus I was paralyzed by fear and not knowing what was ahead. In my heart I thought maybe compassionate care was the best option. Just letting him pass without pain, and without struggle.

I looked at my husband… He had  sat and listened to everything the doctors had told us together. When I heard it, it was all a blur. But my husband had heard every word, every detail. He had mapped out in his head how each surgery would go and what changes would be made to his heart. He understood the risk, he understood it was going to be a long journey… But he said we had to give him a shot.  Our son had not given up yet, so how could we?  He stood up from the side of the bed and said, ” I will sell everything I own, I will go wherever it takes… I will give my son a chance to live. If he dies on that operating table that is ok. I can live knowing that I gave my son every chance he had.”

He made the choice I was to scared to make, the choice to give our son a chance at life.

As I sit here  today and think about our journey over the past 15 years, it has been a long hard road. There were days, nights and even weeks and that I wondered if life was ever going to feel normal?  Would there ever be a day that I didn’t feel the need to count his heart rate, or watch to see how heavy he was breathing. Or would I ever be able to take the emergency bag out of my car, that was packed and ready for the next life flight trip?  The first 4 years were the hardest, we lived in and out of hospitals in three different states. Matthew was very sick and ended up having over 14 surgeries.  Some days I wondered if I really had what it took to be his Momma. But he has been worth every struggle, every tear, every heartache.  He never gave up, so how could I?

Not a night goes by that I don’t check on him before I go to bed.  I still place my hand on his chest to just feel his heart, and I  kiss his forehead. I say a prayer in my heart, thanking my Father in Heaven for him and pleading with the Lord for another day. His journey has taught me that each day really is a gift.

Happy Birthday lil buddy… praying for another healthy year with you!

 

60 COMMENTS

  1. thank you for sharing this, it was so touching to read. YOu are a great mom and I wish Matthew a Happy birthday today and always

  2. Thank you for the hope! We are currently 27 weeks pregnant with a daughter who has a very severe Ebstein’s anomaly. Her heart takes up 86% of her chest. We have been given little hope and the same 3 options for post-natal care. The surgeries would be the same as for HLHS. I try to hang on to hope everyday

  3. Yes it has been nice to keep in touch with you too 😉 Somedays I miss my days at the dealership, lots of great people there

  4. Happy belated birthday Matthew! U0001f382 I know the story but none the less read it and so here you have me in tears (of joy for sure). May God continue to bless all of you for many years to come.

  5. Happy Birthday Matthew!
    My first born son, Taven was born with Truncus Arteriousis. His heart had 3 chambers instead of 4, forming a trunk in one of his chambers. He didnt make it home. Forever 26 days old! Im glad matthew is such a fighter, hes a heart warrior!!

  6. Matthew, means Gift from God.
    As I always believe my Matthew is, yours is also a Gift from God!
    Happy Birthday Matthew! U0001f389
    Thank you for sharing your amazing story with us! I pray that he has many, many more happy and healthy days with such wonderful parents!

  7. Happy birthday to him! I have a son that just turned 16 last month. He was born with special needs. Started out 2 1/2 pounds, spent 4 months in NICU, and I have lost count of how many surgeries. But oh this boy. I’m ashamed to admit but was devastated when we found out. But he has changed me to be a better person. He’s my heart!! ❤️

  8. Omg what a beautiful story and the only option I would take is what they did, never give up on your child, because kids are resilient and have a real quench for life. I’m glad you guys didn’t give up on your precious son and know you never will, Happy BirthdayU0001f388U0001f389U0001f382U0001f381

  9. I remember when he was born. Just a few months after our daughter was born and we almost lost her. I remember telling Matt that his family came first and we would be praying for all of you. There were three babies born to spouses of Larry Miller employees that year that all had some life threatening problem when born. All are healthy today. I thank god for this. I also remember Matt making the decision to become a nurse due to Matthew’s illness. Thank you for sharing Sarah, glad to be able to keep up with your family on FB.

  10. Happy birthday Matthew. My son will be 15 on the 29th of this month and he too has HLHS. Thank you so much for sharing your story.

  11. What a touching story. Thank you for sharing. Praying to my Heavenly Father Matthew has another healthy year. You are a wonderful mamaU0001f60a

  12. Happy birthday Matthew! Our son has HLHS and is 2❤️ We are sending lots of heart hugs!!! This is our son Frankie

  13. Thank you so much for sharing! My son will be 9 next week and has HLHS! Your story is so similar to ours! It is so wonderful to see kids older than my son doing so well! U0001f618

  14. OMG! My son is 4 and born with HLHS and Heterotaxy and after his fontan he was diagnosed with Plastic Bronchitis … and still growing strong !..

  15. Happy Birthday Matthew 🎂🎁 I know how you feel mom ☹️️ but not when my son was born my Emgee was very outgoing he was playing flag football he was 7 yrs old my Emgee kept complaining that his knee hurt my husband took him to the dr and he said I have no idea what is wrong let’s get an x-ray and he did ! The next day I stopped by the dr office after work they took me into his office he came in and put up the x-ray and said Emgee has a tumor on his knee I don’t know what kind 😭 I fell to the ground and started crying 💔😭 our life as we knew it was Gone 💔😭 after amputation chemo surgery after surgery my Emgee passed away in my arms at home he was 10 yrs old 💔😭 all mothers out there please don’t take your children for granted

  16. such an awesome story and glad he’s here with you happy 15th birthday handsome boy and many more to come

  17. What an awesome blessing! Thanks for sharing your story! It gives hope and strength to others who may need it! He is very fortunate to have such loving and caring parents. You have a beautiful family! Happy Birthday Matthew!

  18. Happy Heart Day, Matthew! I am glad that you are here to celebrate another year! Prayers for many, many more!

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