Welcome

Deborah - posted on 10/05/2009 ( 20 moms have responded )

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Welcome..lets get to know each other and be there has support for each other.-Deborah

20 Comments

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Rachel - posted on 11/24/2012

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Hi. I'm Rachel and I have two amazing kids. Emmie is 2 and had a healthy heart and there's Sam who is 8 months and he has HLHS. You can follow Sam's journey via my blog. www.samueldavy.wordpress.com

Reana - posted on 06/01/2012

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My Name Is Reana, I Had A Son Born With HypoPlastic Left Heart Syndrome 11|01|11, Na'Jee

Julia - posted on 10/06/2011

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Hi everyone, my son Gabriel was born 5 weeks ago with HLHS, Unbalanced AV Canal Defect and Trisomy 21 (Downs Syndrome). He is doing great after his Norwood procedure and will likely be discharged next week :).

Heidi - posted on 04/01/2011

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Hi! I have a 5 month old son with hlhs. He was diagnosed at my my 20 week ultrasound and was taken straight to Primary Childrens hospital in Utah right after he was born. He has had the norwood and is due for his glenn in 2 weeks. We have had to move his surgery up because he is growing out of his shunt. It has been a blessing that he has been growing so well, but I am so scared for him to go through the next surgery. I also have 3 older boys that are heart healthy and love their little brother so much. I would love to share experiences and stories with other moms that has gone through or will gopthrough the same experiences.

Jessica - posted on 08/18/2010

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Hi- I'm Jess
My daughter is 12 weeks old , has a twin brother and has HLHS... had the Norwood at 3 days old- has an NG tube but will be getting a G tube next week. She is doing great so far and we plan on keeping it that way! I hope to make some friends to share stories and encouragement with!

Donna - posted on 07/31/2010

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hi

my name is donna my daughter chloe-louise has HLHS shes now 12 years old , has had all 3 ops.

we come from the U.K her hospital is fantastic they c her every year EVALINA CHILDRENS HOSPITAL in LONDON.

Victoria - posted on 05/19/2010

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Hey, my son james was diagnosed with hlhs when I was 24 weeks pregnant. He was premature and had several other complications including a biliary fistula and liver disease, so instead of the norwood we had to do the hybrid palliation. James is now seven months and about to return home from the hospital from the second procedure....which is the norwood and glen combined. I'm here to give support and also find support.

Melissa - posted on 04/10/2010

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hi im melissa and my son dion has hlhs and is 9 years old, hes had all 3 stages and is doing well at the moment.

Deborah - posted on 03/13/2010

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Before I says anything else I want to tell the family who have lost children sorry for your loss. I will always be thinking about the precious little children who earn their wings so early in life. I wanted to share a little more about my son, who will be 7 in July. Carsyn is amazing (just like all others childern are), the will he has today. He has wanted to be heart doctor...the other day at school the class was writing about there dreams and he dreamed that everyone the needs to take meds everyday able have the chance to get them. He so wanted to be a doctor to help other kids like the doctors helped him. I would like to hear alittle more about everyone children. I know we all have learned that everyday is a special day, even if it is 1 or million days. Always remember life is very short. People here are what get me through the hards days.

[deleted account]

I'm Sue.
I found out at my 20 week ultrasound that our son would be born with HLHS.
He has had the norwood and glenn surgeries so far. Four days after the glenn, he suffered a cardiac arrest. Thankfully they were able to save him and we got to bring him home again.
We just celebrated his first birthday. :)

Cheryl - posted on 02/17/2010

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Hi, I'm Cheryl and I have a beautiful 10 month old boy called Micah who has HLHS. He has had the norwood and glenn and is thriving well at home now. We are from the UK and have great care at Birmingham Childrens Hospital

Adriana - posted on 02/07/2010

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Hi. I'm Adriana and have a beautiful son. Thiago is six almost sevent months old and was born with HLHS. Thankfully he is doing well and finally home. I would love to meet some mom's and share our stories.

Kristen - posted on 01/21/2010

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Hi, my name is Kristen and I lost my daughter Madison Haley to HLHS just after her 2nd birthday.

Amanda - posted on 12/17/2009

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Hi everyone

I lost my son David to HPLH and Trisomy 13 on 20th April 2007. I discovered his HPLH which was due to his chromosone abnormality at the 20 week scan. David was born sleeping at 22 weeks gestation.

Love to all and their babies

Deborah - posted on 12/04/2009

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Well I hope everyone and their special children are doing well. I want to wish everyone here "Happy Hoilday" take this time and be thankful for the time we all have had with our great kids. We all have been through so much in our own lives, now we can take to time to share with everyone. Take Care- Deborah

Katie - posted on 11/17/2009

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Hi everyone my name is Katie. My son Weston was born Nov 24, 2007 with HLHS he has had his norwood and glenn surgeries and we are waiting to have the fontan done. He is doing really well considering. Look forward to getting to know you and your stories too!

Kylie - posted on 11/11/2009

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Hi, I have a daughter born on Jan.26/09 who's a HLHS. She was born in Edmonton, AB

Tracie - posted on 10/21/2009

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Hello, I'm Tracie. My son Nicholas was born with HLHS January 18, 2001 at the University of Michigan. I look forward to hearing everyone's story of their special angel and to share Nicholas' story too.

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