I am doing an article for school on heart defects and specifically HLHS.
If you could take a minute and answer these questions that would be greatly appreciated!
1. When did you find out your child had HLHS?
2. Did your child go through any surgeries after they were born?
3. What has been the most challenging thing about having a child with HLHS?
4. What has been the most rewarding thing?
5. What helped you cope with your child having HLHS?
6. What is one thing you would like to tell parents about heart defects?
One other note: If I use your story, would you like me to use your real names or choose fake names to protect your identity?
Thank you so much. You can leave your answers here but if you don't feel comfortable doing that, you can email me at barlowgirlfan17@gmail.com
1. When did you find out your child had HLHS? When he went into respiratory distress at 36 hours old.
ReplyDelete2. Did your child go through any surgeries after they were born? He has had 3 open heart surgeries
3. What has been the most challenging thing about having a child with HLHS? Watching the disappointment in his face when he is not able to keep up or do things his peers can do.
4. What has been the most rewarding thing? Having a child with HLHS has been extremely rewarding to me. I never knew love, unconditional love until he was born and diagnosed. It has introduced me to a world that I never thought would be mine, but because it is it has opened so many doors for me personally by advocating for not only my own child but all children born with a CHD. It enabled me to start a non-profit organization to raise money for CHD research as well as to support others.
5. What helped you cope with your child having HLHS? To be honest, I don't worry about the future all that much. Not that it isn't on my mind, it is, however I choose to always remember that their are others out there in a much worse position than we are in at the moment.
6. What is one thing you would like to tell parents about heart defects?
There are so many people living with a heart defect, it could be your neighbor, your child's teacher or just about anyone you encounter. speak up, talk about it and learn you are not alone in this journey.
One other note: If I use your story, would you like me to use your real names or choose fake names to protect your identity? Real names are fine.
I can be reached at kim.shadek@chdcoalition.org
awesome thank you so much for your responses Kim!
Deletei dont have a child with hlhs but Matt Hammitt from the band sanctus real does and i follow his blog. its called bowens heart (his son's name is bowen). you might go over there and ask him these questions. im sure hed be happy to assist if he can!
ReplyDeleteyes I love Matt and his music and have followed Bowen's story from the very beginning. I wrote on his wife's facebook but maybe I will try and tweet matt and see what he says.
Delete1. When did you find out your child had HLHS?
ReplyDeleteAt our 20 week ultrasound, we were told they couldn't "see" her whole heart well because of her position. A few weeks later, we found out that it wasn't her position... just that her whole heart wasn't formed correctly. A few weeks later, a cardiologist confirmed the actual diagnosis.
2. Did your child go through any surgeries after they were born?
Annabelle had her Norwood at 6 days old. The next day, she failed and had to be opened back up and put on ECMO. She failed her Glenn at 3 months old, and went on to have a transplant at 8 months old. Her new heart began to fail her two months later, and she had another surgery to correct a problem with her coronary arteries in her new heart. She's also had various other non-heart related surgeries.
3. What has been the most challenging thing about having a child with HLHS?
Well, she no longer has it since she is post transplant. But the most challenging thing was watching her so weak and a blue all the time. It was a constant reminder. Even today, she is very behind in most every area of developement because she spent her first 8 months so very, very sick. SO yeah, the hardest thing is watching your child suffer and there not being much you can do to fix it. Except, of course, for prayer!
4. What has been the most rewarding thing?
Watching God be gloried through the life of my daughter. Hands down.
5. What helped you cope with your child having HLHS?
My faith in Jesus, first and foremost, along with my very supportive family and friends.
6. What is one thing you would like to tell parents about heart defects?
That you're not alone. That there is hope, and that you are your child's best advocate, so learn what you can and partner with his/her medical team, because you're now a member of it!
One other note: If I use your story, would you like me to use your real names or choose fake names to protect your identity? You know me... I'm a pretty open book about my Annabelle!
thanks for your responses Krista! your story with her and your writing journey has truly inspired me!
Delete1. We had a fetal nuchal transparency scan and knew at 13 weeks "something is wrong" with baby. At 18 weeks they said they couldn't see heart well and sent us for fetal echo. That was done at 24 weeks and Seth was diagnosed with HLHS in utero.
ReplyDelete2. Seth had the norwood at 5 days old. He had a g-tube surgery at 5 weeks, he had the Glenn at 5 1/2 months.
3. Sadly, Seth passed away at 6 1/2 months old
4. His sweet smile, that his siblings still talk about and remember him.
5. My faith.
6. Hang on!!
1. When did you find out your child had HLHS?
ReplyDeleteAfter my son was born, at about 36 hours. He was within minutes of death because we didn't know.
2. Did your child go through any surgeries after they were born?
My son had his Norwood procedure when he was 12 days old, his Glenn Procedure when he was 6 months old, and will have his Fontan this summer when he is almost 4 years old.
3. What has been the most challenging thing about having a child with HLHS?
The most challenging thing is living life knowing that his heart could stop at any moment.
4. What has been the most rewarding thing?
All of the wonderful families and friends that we have made and knowing that each moment is a blessing from God that we still have our son.
5. What helped you cope with your child having HLHS?
Blogging was the biggest coping mechanism for me.
6. What is one thing you would like to tell parents about heart defects?
While their child will have difficult moments, they should let them live life to the fullest and experience everything possible.
You are welcome to use my name and story.
Thank you Trent so much for your responses!
Delete1. We found out our daughter had HLHS while I was pregnant.
ReplyDelete2. Our daughter has completed two of the three schedules surgeries, the Norwood and the Glenn procedures. Both of which she had her complications but ultimately has done well.
3. The unknown... that is the most challenging. You live everyday without any guarantees and that is just tough, but it also makes you appreciate every moment.
4. The most rewarding thing is my daughter, she is here today with us. Today she is like any typical toddler running around, destroying the house, and living her life to the fullest. She brings light and love to our hearts.
5. Sisters By Heart. I don't know where we would be today with out them and the friendships that we have developed over the past two years. They gave me the strength and hope I needed to fight for my daughters life.
6. CHDs are the most common birth defect. Don't ever think it can't happen to you, because it can and chances are you know someone with a CHD. Be there for your friends and family that are going through life with CHD, they need you more than they will ever tell you.
1. In 1991, 2 weeks before I was due I was sent for an ultrasound to see if Rebecca had turned breech and they noticed her heart was enlarged. They decided to deliver her the next day by c-section.
ReplyDelete2. At one week, she had a pulmonary artery banding and repair of co-arctation of the aorta. At 13 months, surgeons performed the Fontan. This was in 1992.
3. My child passed in 1992, nine days after surgery. During the time we had her, the hardest for me was the uncertainty of her life and watching her suffer during the last surgery. We were quite lucky that she was not in the hospital much and had a good quality of life while here with us. We were able to make some good memories.
4. Seeing the courage and strength of this little baby was amazing. I consider her my teacher about what is really important in life. I have a healthy son that was 2 ½ when she was born and of course I love him; I assumed she would be as healthy as him. But when she was born it really put into perspective a lot of things (I was 23 years old when she was born). It is important to not sweat the small stuff, enjoy the little moments and show your love to one another. She and the experience greatly contributed to my growth as a person. She also taught me to rely on God and faith.
5. My family and my faith and becoming educated about the problem
6. They are so much more common than you would think. I remember being blown away when the cardiologist told us this happens in 1 in 100 births. It is a terribly stressful experience but I would also say to not give up hope because doctors are doing amazing things today because of medical research and CHD babies that have helped pave the way to these amazing advances. Also, look at this experience and child as a gift from God. That is hard to hear when your little one is sick, but no matter how long your CHD baby or child is here, you will be forever be touched and transformed by the heart of this special child. I feel my daughter’s heart lives in me. Online resources, blogging and support groups were not available to me back in 1991-92, but they are a wonderful coping tool today.
Sherri Harrell
Mother of CHD Angel Rebecca Ann Harrell (5/23/91 - 7/4/92)
1. I went in to find out the sex of the baby at 21 weeks. I was told I was having a girl. 10 minutes later a doctor came in and told me something was wrong with her heart. She has HLHS, and that this was a very serious heart defect and that I did have the option of aborting. Well for me that was not a option.
ReplyDelete2. Molly was born on nov.4 2011. She had her 1st open heart surgery, the Norwood at 3 days old. She thrived! At 6 months she had her 2nd open heart surgery, the Glenn. She thrived! 3 weeks later her cardiologist decided to do a heart catheterization and plug a shunt. We were sent home the following day, not knowing there had been an interruption during that procedure (maybe air embalizm). She suffered a heart attack and briefly left me. I pounded on her and she came back! That heart attack damaged the lower apex of her heart. Until that gets better, she does not yet qualify for the 3rd surgery, the Fontan, nor a heart transplant because her anti-body levels are too high from all the blood transfusions .
3. The most challenging thing for us is the unknown.
4. The most rewarding thing, is that Molly is truly the best thing to ever happen to Us. She is strong, beautiful, and truly our angel!
5. What helps Us cope is her. She wakes up happy, she goes to bed happy. That is all we could ask for.
6. The one thing I would like to tell parents is that it is totally worth it! God is GREAT! No matter what happens, it happens for a reason!
- MAKE SURE YOUR CARDIOLOGIST AND SURGEONS ARE ON THE SAME PAGE!-
Note: Tim and Mary McCoy are the very proud parents of Molly McCoy
1. When did you find out your child had HLHS? At our 20 week ultrasound they couldn't get a good picture of his heart so they decided to do another quick u/s at 24 just to look at the heart. That was when we found out he had HLHS
ReplyDelete2. Did your child go through any surgeries after they were born? Norwood at 3 days (18 days in the hospital), Glenn at 6 months, Fontan at almost 4 years old.
3. What has been the most challenging thing about having a child with HLHS? The unknown. Watching other kids with the same condition return to heaven.
4. What has been the most rewarding thing? Seeing my son do the normal every day things - go to preschool, ride a bike, take swimming lessons, play on a soccer team. Some moms cry at milestones because their baby is growing up. I rejoice because my baby is able to grow up.
5. What helped you cope with your child having HLHS? Taking it one day at a time. I try not to let myself worry too much about what the future will bring and just enjoy that today he is doing well.
6. What is one thing you would like to tell parents about heart defects? Every kid is different, but it can be okay, and normal, and wonderful. And don't forget that as a parent, we are just the support team - this heart journey belongs to our kids.
Aimee Hardy, mom to Jack, HLHS, 4.5 year old
1. When did you find out your child had HLHS?
ReplyDeleteDuring a routine 19 week anatomy ultrasound.
2. Did your child go through any surgeries after they were born?
She hase gone through the Norwood and is currently scheduled to have the Hemi-Fontan March 15th 2013.
3. What has been the most challenging thing about having a child with HLHS?
Is had been a challenge to feed her. It seems we are changing our routine every couple weeks to gain control of her fussiness and maintain proper weight gain. That coupled with having a 5year old a 2year old and being a working mom has been exhausting to say the least.
4. What has been the most rewarding thing?
So far its rewarding to see Amelia thrive and have good quality of life.
5. What helped you cope with your child having HLHS?
When we got her home and realized that our life with her is not all tragic. Even though its challenging and the exhaustion is so hard to bare sometimes there are also many moments of happiness. Every smile from her is precious because I have been worried that she would suffer, instead she has many happy moments. I also keep the unknown worries in the back of my mind as much as possible and just worry about current issues. Just those two things will make a huge difference in coping with having such a sick child.
6. What is one thing you would like to tell parents about heart defects?
That although HLHS is rare, CHDs themselves are more common than people think. I would say that the care and attention to detail my daughter has received from all areas of Cardiology leaves me with no worries about how she is being taken care of.
One other note: If I use your story, would you like me to use your real names or choose fake names to protect your identity?
You can use my real name. Maria White mom of Amelia White (3mo old)http://www.carepages.com/carepages/HerBetterHalf
HI Jessica,
ReplyDelete1. Leyda came to us as a foster child, so that social worker phone call asking us to take a fragile toddler, was when we found out. Leyda was 17mths old and had spent most of her life alone, in the hospital setting. In June 2008 her adoption was finalized.
2. She had the 3 stages for HLHS, one at CHOP and 2 at Children's National Medical Center.
3. Leyda died in Oct 2011 at six and a half years old. But her strokes caused so much spasticity/pain in her limbs that was not controllable despite large doses of various meds and botox shots - that cramp-type-pain, magnified, was horrible and it seemingly didn't stop for long.
4. Leyda's joy and her desire to get to her 'real' home in heaven. Her willingness to trust us despite the trauma she had experienced.
5. We felt convicted that Leyda should be adopted by us and so our faith that no matter what the road holds we are doing what this little one needed and was asked of us by God.
6. Ask about the heart at the 20 week sonogram (Leyda was prenatally dx'd), and get a pulse ox screen after delivery.
You may use our names - http://www.carepages.com/carepages/Cheerylittlegirl
Beverley Bouchard
I HAVE A FACE BOOK PAGE FOR MY SON WHO HAS HLHS XX IF U WOULD LIKE TO ASK ME QUESTIONS THEN PLZ FEEL FREE TO MESSAGE ME THIS IS THE LINK TO MY SONS PAGE XX https://www.facebook.com/RomeoWeisssJourneyWithHlhs?ref=tn_tnmn
ReplyDelete