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Bekki Williams
Bekki Williams • 2 years ago

In a matter of minutes your life can change forever. To never go back to where it once was and quickly thrust down an unknown path. Your life as you once knew it comes to a screeching halt as the rest of the world carries on around you. Hospitals become your new home, clinic visits your new vacation destination, nurses and doctors your new family. Tube feedings, administering medications, pulse oximeters, things that most would find terrifying soon become a way of life for you. Two weeks after our second child was born our entire world became the above statement. Our lives would never be the same again. That day we learned our son was born with a broken heart. He had five very complex heart defects, D-TGA, DORV, VSD, Pulmonary Stenosis and Right Aortic Arch. Through three heart surgeries, multiple other procedures and a few setbacks along the way we have learned a thing or two about life and a whole lot about HOPE. Our son's journey with Congenital Heart Disease is far from over, but as long as we have hope, anything is possible!

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My son, Bryson Young, was born with transposition of the great arteries, coarctation of the aorta, Taussing- Bing, VSD, ASD. We had no idea that our son had heart problems until he was born blue and almost died. By the time he was life-flighted to a hospital hours away he was in “profound shock”. He received open heart surgery when he was 14 days old and spent the next four months on a ventilator, fighting for his life. By the grace of God, he was finally healed and his now a spunky, crazy two-year-old.

Our son, Daniel, was post-natally diagnosed with several congenital heart defects at day 2 of life. He underwent open heart surgery at day 7 of life for coarctation of the aorta, several ASDs, and a large VSD at Children’s Hospital Boston. He is now three months old and recovering marvelously. He still has two outstanding congenital heart defects, a bicuspid aortic valve and parachute mitral valve, that are being closely monitored with possible future surgeries pending. We are so thankful to the medical team at Children’s Hopsital Boston and to the Lord for our son’s life.

Anthony was born on 2-11-11 and was a "healthy" baby, so we thought! At about 22 hours of life Anthony was having trouble breathing. After a very long day of multiple tests it was confirmed that Anthony had CoArctation of the Aorta, DORV (Taussig-Bing type), ASD and PDA. This little angel spent the first month of his life in the hospital where he had his first OHS. At for months old he had his second OHS and spent another three weeks in the hospital he had multiple set backs, but he's a fighter and pulled through it! He's now about to turn one and is doing amazing! He is our miracle baby and brings such joy and happiness to our lives each and everyday. We are so grateful to all the wonderful people at PCMC that took care of him.

Maggie Jane was born on 4/4/2007 and changed our lives forever. During her discharge exam, she was diagnosed with Double Inlet Left Ventricle, Transposition of the Greater Arteries, and an Interrupted Aortic Arch. She was transferred to St. Louis Children's Hospital where she later had her 1st of 3 life saving surgeries. She had her final surgery in August 2009 and is a thriving almost 5 year old! She enjoys every minute of every day and she is the light of our lives. We are so thankful to our Heavenly Father for carrying us through every step of this unexpected journey.

William was born in October 2010 and appeared to be completely healthy. Two days later, as we were being discharged to go home from the hospital, an observant nurse escorting us to our car noticed Will's breathing was rapid and shallow and his color didn't look right. We returned with her to the nursery and as we watched through the window, a sinking feeling began to set in that something was seriously wrong. A couple of hours later, we were following our 2 day old baby in an ambulance to the local Children's Hospital. Our son was then diagnosed with HLHS and was fighting for his life after going into shock due to lack of blood flow to his body. Will had to recover for 3 weeks before he had his first open heart surgery, the Norwood-Sano. He did amazingly well and was released to go home 5 1/2 weeks after he entered the hospital. He had his 2nd open heart surgery in March 2011 and did wonderfully again and will most likely have his 3rd operation, the Fontan, sometime in the spring of 2013. Will is now a happy and healthy 16 month old and is hitting all of his milestones right on time. Life with a CHD kid is definitely different but it is still wonderful in every way!

My son Benjamin was born Feb 21, 2006. He had three individual heart defects (Truncus Arteriosis type I, complete AV septal defect, and a coarctation of the aorta), Ben also had Down syndrome. We knew about the TA and the AV defect before he was born, and found the coarc after. We were given surgical options and they were horrendously poor....so we chose to take Ben home on Hospice care a week after he was born. We were told he would live two weeks, if we were very fortunate. But, sometimes life has other plans. Ben LIVED. He started Early On, he made friends. We traveled. He had a host of minor "issues" with his heart, but his heart worked, and he was dicharged from Hospice, medication free, at the age of one year. We lived big with him. My second son was born in December of 2007, and when we brought him home from the hospital, Ben had a cold. That cold got worse, then better, then much worse. We became regular visitors to our pediatrician, and we called Hospice back in on Feb. 13, 2008. Ben left this world on Feb. 14, 2008....exactly seven days before his second birthday. You can see that CHD week is close to my heart.

My son Benjamin was born Feb 21, 2006. He had three individual heart defects (Truncus Arteriosis type I, complete AV septal defect, and a coarctation of the aorta), Ben also had Down syndrome. We knew about the TA and the AV defect before he was born, and found the coarc after. We were given surgical options and they were horrendously poor....so we chose to take Ben home on Hospice care a week after he was born. We were told he would live two weeks, if we were very fortunate. But, sometimes life has other plans. Ben LIVED. He started Early On, he made friends. We traveled. He had a host of minor "issues" with his heart, but his heart worked, and he was dicharged from Hospice, medication free, at the age of one year. We lived big with him. My second son was born in December of 2007, and when we brought him home from the hospital, Ben had a cold. That cold got worse, then better, then much worse. We became regular visitors to our pediatrician, and we called Hospice back in on Feb. 13, 2008. Ben left this world on Feb. 14, 2008....exactly seven days before his second birthday. You can see that CHD week is close to my heart. Here's a link to the blog I kept while Ben was with us: randallfam.livejo...

My heart hero, Chase, was born in 2009 with Hypoplastic Left Heart Syndrome (HLHS). Two heart surgeries, two bronchoscopies, two heart catheterizations and two minor surgeries later at MUSC Children's Hospital, he's the strongest person I know! He is the biggest blessing and greatest inspiration in my life and I thank God every day for the privilege to be his mama!

CHD Awareness - Ryder Amelia was born 7/1/11 and we knew nothing of her heart defect. We noticed even in the hospital that she wasn't eating much, but was told she was a snacker. Then we were told she had colic. Finally, someone heard her murmur and we saw a cardiologist 8/11/11 and realized she had multiple defects- large VSD, Pulmonary Stenosis, and several ASDs. On 9/15/11 she had successful open heart surgery to repair all of her defects. Ryder is now 6 months old, thriving and constantly showing her happy, sweet and spunky personality.

Sweet Emerson Rose came into this world on April 11, 2011 at MUSC (Medical Univ. of South Carolina) with hypoplastic left heart syndrome (HLHS). She underwent open heart surgery at 4 days old and came through like a champ. For the next 11 weeks she recovered in the hospital until after 76 days of life, very suddenly on June 26, 2011, God called her home. We are so thankful that during her 76 days of life, she was a happy baby. She smiled all the time and loved to look at new things. When she would look at you, it was if she was looking into your soul. It would melt your heart each time. During the time we spent in the hospital with Emerson Rose, we realized what it meant to us that we were helped by so many people. We realized that life should be about glorifying God by helping others. We were inspired by God to start a foundation in Emerson’s name to help fund research on CHD’s and help families with sick children in the hospital. www.emersonrosehe... www.caringbridge....

We did not know that Carson had been born with ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery) until he coded at home on Memorial Day. He was resuscitated and transferred to Sunrise Children's Hospital for emergency open heart surgery the following day. I had no idea what a congenital heart defect was or how deeply it could impact a family, until it happened to mine. I am thankful for every single day that I get to spend with him. Though he has permanent damage to his left ventricle, his cardiac function is adequate with the help of medication. He is the happiest baby I have ever known. We are blessed, and I will spend the rest of my life paying that forward. vimeo.com/...

Our Angel Aaron was born April 19, 2011 and lived to the tender age of 2 1/2 months when he left us to return to his heavenly home on July 7, 2011. He was diagnosed in utero with Hypoplastic Left Heart Syndrome. When he was born he was stabilized and then transferred to the local Children's Hospital where they decided he really had Hypoplastic Right Heart/Tricuspid Atresia/Transposition of the Great Arteries (TGA). He had his first open heart surgery at 1 week old. He did great in his recovery until he had reoccurring bowel issues (NEC) that kept him in the hospital. He spent a majority of his short life there was able to be home with us for about 2 weeks before the PICC line he had gave him an infection which took him from us. We are so grateful to have had this Heart Hero in our lives and can't wait to be with him again! We hope that because of him we are able to help spread more awareness on CHDs.