Craft Baby To Be Born With Rare Heart Syndrome Love Fund has been Created at Adrian Bank

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Follow Remington’s lifelong journey by liking the Rally for Remington’s Heart – HLHS Facebook Page

 

Donations can be made at any Adrian Bank location under the Baby Craft Love Fund, additionally, A GoFundMe Account has been set up and can be viewed here at gofundme.com/remingtoncraft


On October 24th, 2016, Brandon ( a former resident and Butler graduate ) & Kaleigh Craft went to a routine ultrasound. Afterward, they were informed that their unborn baby (Remington Craft) had a Congenital Heart Defect. They were immediately referred to Children’s Mercy Hospital in Kansas City for further testing.

Two days later after an echocardiogram was completed, Dr. Tara Swanson, the Director of Fetal Cardiology at Children’s Mercy Hospital asked to meet with Brandon & Kaleigh. Dr. Swanson regretfully informed them that their unborn daughter did, in fact, have a fatal heart defect. It is one the worst types called Hypoplastic Left Heart Syndrome (meaning she essentially has half a heart). HLHS is a complex and rare heart defect present at birth (congenital). In hypoplastic left heart syndrome, the left side of the heart is critically underdeveloped.

If your baby is born with hypoplastic left heart syndrome, the left side of the heart can’t effectively pump blood to the body, so the right side of the heart must pump blood to the lungs and to the rest of the body.

HLHS is NOT curable and has no known cause.

Dr. Swanson and her team informed the Crafts of their options: Comfort Care- allowing the baby to be born and to naturally pass away within a few days, or to undergo a series of extensive open heart surgeries.

The palliative surgeries would entail a long-term stay and constant monitoring of baby Remington at Children’s Mercy. Upon discharge from the hospital, the CHAMP (Cardiac High Acuity Monitoring Program) team will monitor Remington from home between surgeries over the next several years.

New procedures are being conducted, but as of right now, only a few HLHS patients have survived into their early 30’s. Many have needed heart transplants.

Due to the high-risk pregnancy, Kaleigh has been given the chance to deliver at Children’s Mercy. This is a rare opportunity since CMH is strictly a children’s hospital.

HLHS is extremely rare. HLHS is only seen in 1 out of every 4,344 babies.

The Crafts had to switch hospitals and change all of their plans. They are now members of the Little Mended Hearts organization and plan to be advocates of the American Heart Association and CMH. They plan to bring CHD & HLHS awareness to friends, family and the public, no matter the fate of their baby girl.

Donations can be made at any Adrian Bank location under the Baby Craft Love Fund, additionally, A GoFundMe Account has been set up and can be viewed here at gofundme.com/remingtoncraft

 

Kaleigh is a stay at home Mom, but during this time she will be staying in the hospital and will need to find childcare for their three kids Kaiden, Addisyn, & Gracelyn while Brandon works. They will be making several trips from hospital to home over the next several months and years. Remington’s doctors are also monitoring other irregularities that may require additional surgeries. Remington will undergo her first surgery called the Norwood procedure within her first week of life. The details of this are unimaginable and will not be shared. She will need two more surgeries to treat the condition (not cure).

Over the next couple months, the Crafts will be educating themselves more on this condition.

Ironically, when their daughter arrives she may be born during the national CHD awareness week February 7th – 14th.

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