Congenital Heart Defect

[Lor]

Hi.
In February 2005 at a 20 week scan, my daughter was diagnosed has having Hypoplastic Left Heart Syndrome. Krystall was born 23 July 2005 at 5.07am by c-section. We were offered 3 choices. 1. Termination. 2. Take her home to pass away.
3. Let her have 3 stage surgery. We chose the 3 stage surgery. Krystall had her 1st open heart surgery 26 July 2005 at 3 days old. She was in theatre for 8 hours. The longest 8 hours we had ever known! She sailed through the op. The sites we had to see in i.c.u were unbearable. The machine's, she had wires and tubes every where. Her colour!! Well I wouldn't like to see that coulour in any child ever again. Krystall was knocking the gates to heaven at the time. But after 2 weeks in icu, she went up to the recovery ward. She had fought her hardest fight of her life. She fought so hard it amazed us!! The 2nd operation was performed March 23 2006 at 8 months old. This time, things were different. Krystall was admitted March 17 2006 as she had low sats levels (oxygen levels in her blood). The hospital decided to keep her in until after her 2nd operation. That was performed 23 March 2006. Krystall was in theatre for 4 hours this time, such a shorter operation. She spent 1 night in icu and came home 6 days later. Krystall is now 1 week away from her 1st birthday (a birthday the docs told us she may never see)!! She is slowly gaining weight, although still quite small for her age.
She eats pretty well. Even though the docs said we may have trouble getting her to eat.
She is a happy, bubbly little girl who is full of smiles and baby chit-chat. If any of you would like to look up about Krystall's condition, please do. It's HYPOPLASTIC LEFT HEART SYNDROME or HLHS for short.
Sorry it's long, but thank-you for taking the time to read about Krystall's life.

Love Lorretta
xx

[MyBrownEyedBoy]

Welcome, Loretta. I too have a child with a congenital heart defect. My son Logan was born with a bicuspid, stenotic aortic valve. He's had 3 balloon angioplasties, 1 closed heart surgery and 1 open heart double valve transplant. We face more valve transplants as he grows and wears them out. I totally feel for you, my little man was so covered in tubes and wires and was on a vent the first time I saw him. So not easy. This group is fantastic for support, I came here to vent and cry when Logan was in the hospital. Good luck to you. And congrats on making that first birthday. I wish her many more.