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15 Reviews
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October 26, 2013

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October 26, 2013

My daughter was diagnosed with CHDs at birth. I met Valerie through information I received while at an appointment at Children's Mercy Hospital. CHD Families does so many great things, but as a heart mom, the best gift is its ability to connect families in need of support. Being able to share our stories, fears and triumphs alike, is so comforting. So thankful to Valerie, her family and heart mom friends for seeing the need and making it a reality for all of us!

Ways to make it better...

If I had to make changes to this organization, I would...

change nothing! I think that the vision for the future of the organization is always looking forward cautiously. Resources are used effectively and the organization is growing!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

October 26, 2013

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October 26, 2013

Chd families has provided us with other heart families. It's amazing to finally know I am not alone in this journey! I found this group when my son was 7, until that point I felt very alone. He's now 11 and I know I'm not alone. Bringing heart families together is awesome!!!

Ways to make it better...

If I had to make changes to this organization, I would...

Nothing

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

April 25, 2011

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April 25, 2011

My son Eagan was born 8 weeks early by emergency c-section in Wichita, KS. Less than 4 hours later he was flown to Kansas City, MO to Children's Mercy Hospital for emergency open heart surgury. He has a condition called a 3rd degree heart block - he has a pacemaker and will have one for the rest of his life. CHD Families Association made my stay of 8 weeks with him so much nicer. The package they delivered with a blanket for him and a few necessities for me, made my day. My son still sleeps with his blanket almost 10 months later and it's one of my favorites as well. The people of CHD Families are warm hearted and inspirational making hard days of parents with "heart babies" so much better.

The Great!

I've personally experienced the results of this organization in...

every aspect of my life. They are a wonderful support group, and there is always encouragement and answers to questions - no matter how silly I think the questions may be!

Ways to make it better...

If I had to make changes to this organization, I would...

Do nothing. They're wonderful.

September 14, 2010

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September 14, 2010

Erin Ann Kelley was born in Nashua, NH on 11/1/93. Right before she went home from the hospital her pediatrician heard what he believed to be the murmur of a VSD and recommended that she see a pediatric cardiologist. When she was 8 days old an echocardiogram revealed a moderate sized VSD, moderate sized ASD, right sided aorta with left ligamentum, and aberrant right subclavian artery. These last two defects combined to form a complete vascular ring, encircling her trachea and esophagus. She was not showing any signs of distress so her parents took her home with instructions to watch for signs of congestive heart failure. When she was 3 weeks old a bout with RSV sent her into heart failure. She was placed on Lasix and digoxin. Over the next 11 months she had recurrent RSV, bronchiolitis, and ear infections. She was in and out of the hospital repeatedly until her first birthday. At the age of 1 it was revealed during a routine echo that the ASD had spontaneously closed. With these findings her cardiologist felt that it was worthwhile to continue to watch her to see if the VSD would also close or get smaller. He felt that the vascular ring would eventually need to be repaired but that this could wait until she was older. Over the next few years she did well. She was smaller than other children her age but could still keep up. At the age of 8 she began to have problems breathing and swallowing solid food. Her cardiologist felt this was due to the vascular ring which tightly encircled her trachea and esophagus. In May 2002 she underwent a video-assisted thoracotomy to repair the vascular ring. The doctors still believed it was premature to repair the VSD, even though it had not changed in size over the years. After the VATS procedure she seemed to have fewer problems swallowing, although her breathing was still labored when she was active. The doctors did not feel this indicated any problems and recommended continued monitoring of the VSD, which they felt would not adversely affect her over the course of her life. However, by the age of 10 her parents were not comfortable continuing this conservative treatment. Erin seemed to tire very easily. On February 6, 2004 Erin and her parents traveled to NYC to consult with cardiologists at NYU Medical Center. After an echocardiogram revealed that her heart was considerately enlarged and leakage from several valves was occurring, they recommended surgical repair. Fortunately surgeons at NYU have developed a minimally invasive open-heart procedure which eliminates the trauma of a sternal approach. Instead, an incision through the right side of the chest between the ribs allows surgeons to access the heart. This approach is both cosmetically and medically desirable. The resulting scar is cosmetically superior, infection rates are lower, and healing time is greatly reduced. During surgery it was discovered that Erin had developed a double chambered right ventricle, which is a rare and very serious complication of a VSD. Surgeons were able to repair both the VSD and the DCRV and Erin had an uneventful recovery. After surgery she developed a right bundle branch block. She also has a very small residual VSD with a leak next to the surgical patch, so she is in the small group of people who still require antibiotic prophylaxis before dental appointments and several other procedures. She was back to school 10 days post-op and went skiing just 6 weeks after surgery! Today Erin is a healthy teenager who plays field hockey and lacrosse competitively and helps me coach a youth soccer team.

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The Great!

I've personally experienced the results of this organization in...

An appreciation of how my daughter's defects will affect her life.

More feedback...

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

August 19, 2010

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August 19, 2010

When my son Xavier was born in 2003 with Hypoplastic Left Heart Syndrome, I was in shock. After a perfect pregnancy, a sonogram revealed that something "may" be wrong with his heart. This was the day before he was born. When he was officially diagnosed family and friends got on the internet printing various articles on HLHS. Everything that I read scared me. What I didn't know was that my best friend in Alabama was searching by leaving messages on different CHD websites. A woman named Julie responded to one of these messages saying that she didn't live very far from the children's hospital. That she had a son with a heart defect and that there was a Congenital Heart Defect support group in the area. I spent the majority of my time in my son's room in the PICU. Even though I had a great amount of support from family and friends, I still felt alone. I was thrust in this life and I didn't know what to expect or how I would handle it. One afternoon I left my son's room and an envelope had been left for me. Inside was a folder with information about The Congenital Heart Defects Families Association. Julie had dropped it off. With in the span of an hour I had a renewed sense of strength and hope. Most of what I had read previously about CHD left me with a grim picture of my son's future. But here was a pamphlet showing happy, smiling kids. Most importantly I realized that I wasn't alone. My son faced many ups and downs, and through it all CHD Families was there to support us. They truly become your family. When we went to St.Louis to wait for a heart transplant we received care packages. Those really brightened up the long days. Sadly my son Xavier passed away on May 23rd 2005, one month and one day after his heart transplant. He was 21 months old. After my mom and my grandma, Julie from CHD Families was the next person that I called. She was on her way to a support group meeting with some of the other members. She said that when they arrived for the group and told everyone the news, they cried. CHD Families truly becomes your family. Since my son has been gone, a little over 5 years ago, CHD Families continues to be a source of support with the CHD Families Grief support group. When I met Julie, along with Valerie, (who became one of my biggest supporters), CHD Families was a small group. I don't know the numbers but they have grown. They have activities to get the kids together, a yearly picnic, they participate in the heart walk every year. There are online and face to face support groups available. They provide care packages to families in the hospital. I can't say enough wonderful things about CHD Families Association. There is a candle lighting in Dec. every year for National Children's Remembrance Day. It is a very nice way to remember your child. I can't imagine having gone through all that we did with our son and not having CHD Families there to support us. They are an amazing group!

The Great!

I've personally experienced the results of this organization in...

their offering of support to my family.

Ways to make it better...

If I had to make changes to this organization, I would...

not change anything.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

meeting other families and children with CHDs, participating in the activities.

The kinds of staff and volunteers that I met were...

kind, encouraging, supportive

If this organization had 10 million bucks, it could...

go to helping fund research for Congenital Heart Defects. There is still so much unknown.

Ways to make it better...

my experience with the group has been wonderful.

In my opinion, the biggest challenges facing this organization are...

I don't know of any.

One thing I'd also say is that...

if you have a child with a congenital heart defect I would urge you to look into Congenital Heart Defects Families Association

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2009

August 7, 2010

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August 7, 2010

At two and half days old my daughter was being discharged from the hospital. She was not doing perfectly well so I took her to the nursery to have the nurses check her out. It turns out that she was dying. The nurses and doctors worked very hard and fast to save her life--she was minutes from being gone. Keep in mind that at this point she was already discharged by the pediatrician. After getting her stabilized, Caylee was taken to Children's Mercy Hospital. Later that evening we were informed that our precious daughter has a congenital heart defect called Hypoplastic Left Heart Syndrome. A day or so later we were given a box from CHD Families. There was all kinds of information about Heart Defects. Information was provided to get support, so I called. I was contacted by a woman whose son has the same condition as my daughter. What a feeling to hear all the same things I was going through. I no longer felt alone. Later we found out that they are in the AHA Walk every year to raise money for CHD research. And every dime raised goes only to Congenital Heart Defect research. This organization has been so nice to have. We attended their annual picnic. Being at the picnic we were able to meet even more people with the same condition as our daughter. Everyone is so easy to get in contact with. They are working hard to make more people aware of CHD's. I never knew that it was the #1 birth defect. Every person in America should know this!!

The Great!

I've personally experienced the results of this organization in...

our families most critical time of need. When our daughter was diagnosed with a Congenital Heart Defect.

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

July 10, 2010

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July 10, 2010

About 3 1/2 years ago my wife and I went to our ultrasound at 22 weeks. It was then that we found out that our son was going to be born with heart defects. We were scared and felt very alone. Of course our family and friends offered support but they weren't in our shoes and didn't truly understand what we were feeling. After searching the internet and talking to people the only organization we could find was CHD Families Association. I talked to Valarie Rexin and she could totally relate to what we were feeling. When we were at the hospital she sent us a couple of bracelets and a blanket. Even though she was a couple of thousand miles from us at least we knew there was someone in the world who knew what we were going threw. It may not seem significant to some but we didn't take those bracelets off until our son was a year old. The year following our son's birth a new nonprofit organization in our area started up and we belong to it but Valarie gave us the support we needed when we needed it. She is very active with her organization, in fact the president of the group we associate with knows her and has worked on the quilt project with her in the past.

Photos

The Great!

I've personally experienced the results of this organization in...

Gifts we received.

Ways to make it better...

If I had to make changes to this organization, I would...

I keep up on them more than once a year to see what they are doing. They have some nice things for sale on their site. They are doing a wonderful job and deserve all the support they can get.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

networking

The kinds of staff and volunteers that I met were...

amazing

If this organization had 10 million bucks, it could...

provide the loving support families need. I can't imagine all they could do with that much money but I know it would be put to good use.

Ways to make it better...

I lived near them but I was a long way away and they still touched our hearts.

In my opinion, the biggest challenges facing this organization are...

continued funding to help meet the growing needs of families with children who have heart defects.

One thing I'd also say is that...

we appreciate how they reached out to us even though we were so far away. I think Valarie understood the helplessness we felt.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2006

June 26, 2010

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June 26, 2010

My son was diagnosed in-utero with Tetralogy of Fallot. I found CHD Families through Children's Mercy and attended support group meetings before he was born as well as during his first year. I really enjoyed getting to know other CHD families and I learned a lot about surviving hospital stays, advocating for my child, and generally what to expect with a CHD child. CHDFA sent us a care package during our hospital stay including a handmade blanket which made us feel very welcome.

The Great!

I've personally experienced the results of this organization in...

helping to raise money for CHD research through the KC Heart Walk.

More feedback...

The kinds of staff and volunteers that I met were...

VERY friendly and helpful

If this organization had 10 million bucks, it could...

reach every family with a CHD kid

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2008

June 24, 2010

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June 24, 2010

CHD Families has provided support to my family before, during and after our daughter's 3 heart surgeries. They provided care packages to us after the surgery which included a hand-made blanket for our daughter and meal tickets so we did not have to worry about paying for all of our meals while in the hospital. CHD Families also provides a face-to-face support group which helps us connect with other families that are going through some of the same issues. This helps us realize that we are not alone. This organization has been amazing for our family to be a part of and we are grateful for all they do!

The Great!

I've personally experienced the results of this organization in...

I have seen this organization grow throughout the years in the number of families it supports and in the amount of activities it is able to offer.

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 24, 2010

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June 24, 2010

In a scary situation watching my child go through heart surgery and there were people there who had been through the same things that helped me to cope with it all. They have a great support system of families and the people in charge are just exceptional. They really made a difference in my life and I am forever greatful for this non-profit.

The Great!

I've personally experienced the results of this organization in...

helping other parents who are in the same situations. Helping with fundraisers and care packages. Just getting the word out.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

being given hope.

The kinds of staff and volunteers that I met were...

exceptional families.

If this organization had 10 million bucks, it could...

reach even more families and help them to understand that they are not alone.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

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