Mended Little Hearts Open Forum

Hi Kayla,

First off I just want to say that I'm hoping for the absolute best for your little one and am sending you the biggest hug. My son is 7 months old and had open heart surgery at 5 weeks. He has a hypoplastic left side of his heart and required an arch enhancement, VSD & ASD closure. We still have one outstanding issue with his mytrial valve that may require surgery in the future. I fully relate to checking for breath and feeling his extremities for a pulse. Perhaps to an outsider that sounds odd, but I think any parent who has gone through this level of trauma has done those things. I hope your son is comfortable and his health continues to strengthen.

You're further down the journey than I am, and I know the prospect of more surgery/interventions is terrifying. I truly hope that whatever the best outcome for your boy is will come to fruition. You're not alone.

My son is 17 years old and has Hypoplastic Left Heart Syndrome. He has faced many obstacles over his life but is a survivor. He just started his senior year and is being sought after from multiple colleges for his academic achievements. I would love to tell everyone that our worries get easier, but they don't. I still find myself checking for breath, looking for signs of heart failure, etc. The best advice I can give is to ask as many questions as you can and don't accept generic answers. You know your child better than anyone. If the answers or course of treatment doesn't seem to fit the issues your child is having, say something. My thoughts and prayers are with our heart kids as well as their parents during our turbulent journeys.

Hi Kayla,

First off I just want to say that I'm hoping for the absolute best for your little one and am sending you the biggest hug. My son is 7 months old and had open heart surgery at 5 weeks. He has a hypoplastic left side of his heart and required an arch enhancement, VSD & ASD closure. We still have one outstanding issue with his mytrial valve that may require surgery in the future. I fully relate to checking for breath and feeling his extremities for a pulse. Perhaps to an outsider that sounds odd, but I think any parent who has gone through this level of trauma has done those things. I hope your son is comfortable and his health continues to strengthen.

You're further down the journey than I am, and I know the prospect of more surgery/interventions is terrifying. I truly hope that whatever the best outcome for your boy is will come to fruition. You're not alone.

Hi,  My name is Robert.  I was born in 1946 with coarctation of the aorta.  I had corrective surgery in December of 1956 at the age of 10.  I am now age 77 (will turn 78 on September 21st).  I am still working full time and doing well.

I know the stress this caused my family and would like to share my experence.

My son is 17 years old and has Hypoplastic Left Heart Syndrome. He has faced many obstacles over his life but is a survivor. He just started his senior year and is being sought after from multiple colleges for his academic achievements. I would love to tell everyone that our worries get easier, but they don't. I still find myself checking for breath, looking for signs of heart failure, etc. The best advice I can give is to ask as many questions as you can and don't accept generic answers. You know your child better than anyone. If the answers or course of treatment doesn't seem to fit the issues your child is having, say something. My thoughts and prayers are with our heart kids as well as their parents during our turbulent journeys.

My son is 17 years old and has Hypoplastic Left Heart Syndrome. He has faced many obstacles over his life but is a survivor. He just started his senior year and is being sought after from multiple colleges for his academic achievements. I would love to tell everyone that our worries get easier, but they don't. I still find myself checking for breath, looking for signs of heart failure, etc. The best advice I can give is to ask as many questions as you can and don't accept generic answers. You know your child better than anyone. If the answers or course of treatment doesn't seem to fit the issues your child is having, say something. My thoughts and prayers are with our heart kids as well as their parents during our turbulent journeys.

Hi Kayla,

First off I just want to say that I'm hoping for the absolute best for your little one and am sending you the biggest hug. My son is 7 months old and had open heart surgery at 5 weeks. He has a hypoplastic left side of his heart and required an arch enhancement, VSD & ASD closure. We still have one outstanding issue with his mytrial valve that may require surgery in the future. I fully relate to checking for breath and feeling his extremities for a pulse. Perhaps to an outsider that sounds odd, but I think any parent who has gone through this level of trauma has done those things. I hope your son is comfortable and his health continues to strengthen.

You're further down the journey than I am, and I know the prospect of more surgery/interventions is terrifying. I truly hope that whatever the best outcome for your boy is will come to fruition. You're not alone.

Hi Krestina,

I was born in 1946 with coarctation of the Aorta.  The first successful surgical repair for coarctation of the aorta was performed in 1944 by Dr. Robert E. Gross at the Children's Hospital in Boston. This pioneering surgery marked a significant advancement in the treatment of this congenital heart defect.  In 1956 at the age of 10 my CoA was repaired at Kansas University Medical Center.  It was as an adult that I came to understant how much stress this caused my mom.  I am now age 78, almost 79 and still in good health.  CoA, if repaired is not a death sentence.  

I have outlived some I the friends I grew up with.  I hope that sharing my experience will help you feel better.

Robert Pike

My son is 17 years old and has Hypoplastic Left Heart Syndrome. He has faced many obstacles over his life but is a survivor. He just started his senior year and is being sought after from multiple colleges for his academic achievements. I would love to tell everyone that our worries get easier, but they don't. I still find myself checking for breath, looking for signs of heart failure, etc. The best advice I can give is to ask as many questions as you can and don't accept generic answers. You know your child better than anyone. If the answers or course of treatment doesn't seem to fit the issues your child is having, say something. My thoughts and prayers are with our heart kids as well as their parents during our turbulent journeys.

Hi Kayla,

First off I just want to say that I'm hoping for the absolute best for your little one and am sending you the biggest hug. My son is 7 months old and had open heart surgery at 5 weeks. He has a hypoplastic left side of his heart and required an arch enhancement, VSD & ASD closure. We still have one outstanding issue with his mytrial valve that may require surgery in the future. I fully relate to checking for breath and feeling his extremities for a pulse. Perhaps to an outsider that sounds odd, but I think any parent who has gone through this level of trauma has done those things. I hope your son is comfortable and his health continues to strengthen.

You're further down the journey than I am, and I know the prospect of more surgery/interventions is terrifying. I truly hope that whatever the best outcome for your boy is will come to fruition. You're not alone.