229760 tn?1291467870

My son was born with HLHS

I gave birth to my beautiful son Cooper on June 6th. He returned to heaven on July 23rd. It took us 2 years and miscarriage to get him and it only took 7 wks to loose him. He was born with a heart condition called HLHS. I found out about it at my 18wk ultrasound. It felt like our world had ended, but the doctors gave us all our possiblities and the only one we considered was fighting for his life.  When he was around two weeks old he had his first open heart surgery, sadly it only temporaily "fixed" the problem for about a week. So, during the next couple weeks he had two more surgeries and several cath labs.  On July 23rd the doctor told us he was not going to make it and we had to decided when to stop the medicine. I told him I would never do this. My brave son made the decision for us, he returned to heaven when they placed him in my arms. He looked up at me and gave me this look like everything was going to be okay.  That was the third time I ever got to hold him.  His chest was still open so we saw his heart stop beating, this image still plays over and over in my head.

I never thought at the age of 27 my world be shattered. I see no meaning of going on with my life. That really scares me. I am going to counseling and I am going to support groups. I am also reading books on grief.  I do have good days but they are always plagued with bad moments.  I am coming to you guys in hope that I can find someone that shares my pain.

We now owe over 2 million dollars to Children's Hospital and just the stress of this alone is pushing me futher and futher into depression. I feel like my life is spinning out of control.... I want my son and my old life back.

Sorry to be so long.

6 Responses
93532 tn?1349370450

I fear no words I can say will help easy this pain. Your feelings are so raw right now and you have experienced a pain few ever have. Counseling and grief support groups are a wonderful idea, though it will take time before you feel the benefits. Keep going.

I found offering support to others in me position helped me to cope with my own losses over the years. I cannot imagine how painful it must be to lose a baby the way you have. I have lost 5 pregnancies and know it pales in comparison to what you have gone through. But I know spending time on here for the last 5 years giving support to women going through a miscarriage and eventually celebrating the birth of a child has helped heal my wounds.

Perhaps with a little time and support from friends, family, and even some folks here, you will find some measure of comfort and solace.

And as far as Children's, they are *supposed* to be a very forgiving hospital when it comes to payment. If you would like, I could do some looking into programs for you.

My heart simply aches when I hear of stories like yours. You have lived through my nightmare. You have come through this and found this little corner of the web for a reason, perhaps your experience and strength can help someone else.

If you ever need to talk, please let me know.
229760 tn?1291467870
Thank you so much!! Your kind words truly mean a lot. I look forward to getting to know you too!!!

I am sending you a sticky note!!!

Avatar universal
Hi Rachel,

I'm so sorry for your loss & pain. I lost my sweet baby Reed in 1993 to HLHS, six days after he was born. I still wonder today if Reed would have made it if we would have gone through the surgeries. In '93 there wasn't many good statistics for heart surgery or transplant.

Please know that it does get better over time. I remember a long time ago that I didn't feel like I could go on. I still miss Reed of course, but my life is wonderful today.  I look so forward to seeing him again one day.There's nothing anyone can say or do to ease your pain. Turn to God, and sit in His lap. He loves you very much.
I will pray for your aching heart.

Avatar universal
Your story brings me to tears.  Tomorrow (2-28-09) is my son Garret's 13th birthday.  He was born with HLHS and a 2 vessel umbilical cord.  Despite having 3 ultrasounds during my pregnancy, his condition went undetected until birth.  Almost immediately after birth, Garret went into severe shock.  His health continued a rapid decline.  My precious little man lost his battle at 4 days of age.
Just as in your situation,  my Garret was the long-awaited child.  At age 16, my husband and I lost our first pregnancy through miscarriage.  I went through years of gynecological problems and we were unable to conceive until I was 21.  We were so incredibly grateful.  Then on 2-29-96 came the horrible news of his condition.  
My husband and I went on to have 4 more beautiful children who have been a blessed addition, not a replacement, to our precious Garret.  They saved me from the insanity that I felt as a result of losing him.  I pray that God will give you comfort and peace.
Avatar universal
My granddaughter is 14 yrs old has hlhs and has all the surgeries. She now must go on a list for a heart transplant.  
Is there anyone who has gone through this.
Avatar universal
Hello and welcome to our site. I hope you will find support on here while you stuggle with the things ahead. My daughter has been through a transplant; perhaps a few more here on the site have also had to face this surgery and can offer you support.

Take care
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