My son Max was diagnosed with double outlet right ventricle with pulmonary atresia, asd, vsd, and dysplastic aorta the morning after he was born. (A simple pulse ox test confirmed our pediatrician's suspicion that something was wrong. It is not required in Kansas, YET!) CHD families has members who are working on it! He was flown to Kansas City Children's Mercy Hospital that day. He had his 1st surgery at 4 1/2 weeks. We were flown back up a couple times throughout the year and he was repaired on 12-12-12. After a little set-back he is healed and thriving! He will required pulmonary valve replacements for the rest of his life. CHD families sent us a nice care package in the hospital, matched us with a family with similar defects, and have a support group on facebook where I can ask my "heart baby" questions. We have spent some time with local heart families through CHD connections. We love seeing the familiar faces at events like the Heart Walk! This organizations main help to me was to help me not feel alone in this journey of everything "heart." :)
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!
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!!!
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.
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.
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!
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!!
I moved to KC from Chicago when my daughter (now nine) was one year old. She had just had a VSD repair. I felt so alone and like I didn't have anyone who was going through what we were. Later, I found out about CHD. I joined and my daughter and I have taken food to the hospital and walked the heart walk together. She does not like to draw attn. to her condition, so I follow the website. I am so happy for all the parents that have this great resource when they need it most. Every time I look at the website I cry... it takes me right back to the moment of her surgery. Valerie does an incredible job with this website. Any parent, or loved one with a child who has been through this will appreciate this great organization.
Our son was born with a complex congenital heart defect in 2008, and we found this organization through Children's Mercy Hospital in Kansas City. This organization provides support meetings every other month, carepackages to inpatients, and an online support system through email. CHD Families also organizes an annual picnic and team for the Kansas City Heart Walk. We have received invaluable support and information from this group, which has helped us be better parents/advocates for our CHD child.
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.