Baby Remington's Final Journey
Donation protected
On March 25, 2017 baby Remington passed away. She has since been cremated and we are saving up to bring her home, but this time as a diamond.
Remington’s Story:
On October 24th, 2016, Kaleigh Craft and I went to a scheduled ultrasound during which we were informed that our baby (Remington Craft) had a Congenital Heart Defect. We 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 Kaleigh and I. Dr. Swanson regretfully informed us that our unborn daughter did, in fact, have a fatal Congenital Heart Defect. It is one the worst types called Hypoplastic Left Heart Syndrome (meaning she essentially has half a heart).

HLHS is NOT curable and has no known cause.
Dr. Swanson and her team informed us of our options including Comfort Care (allowing the baby to be born and to naturally pass away within a few days) or undergo a series of 3 open heart surgeries by the time she is 3 years old. (Norwood procedure- around 1 week old, Glenn procedure- 4-6 months old, and Fontan procedure- 2-3 years old).
The surgeries would entail long term stay at Children's Mercy and constant monitoring of baby Remington during her stay and afterward. We will be utilizing the CHAMP (Cardiac High Acuity Monitoring Program) team who will monitor Remington from home between her first and second open heart surgeries.
New procedures are being conducted, but as of right now only a few HLHS patients have survived into their early 30's and many have needed heart transplants.
Thankfully, Kaleigh has been granted the ability to deliver at Children's Mercy, which is a rare opportunity due to the hospital being meant for children. This way Remington will get the special care that she needs.
HLHS is extremely rare. HLHS is only seen in 1 out of every 4,344 babies.

Kaleigh is a stay at home Mom, but after the baby is born she will be staying in the hospital for an extended period of time. We will need to find childcare for two of our three kids (Kaiden, Addisyn, & Gracelyn) while I work. We 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 in the future.
Remington will undergo her first surgery called the Norwood procedure within her first week of life. She will need two more surgeries to treat the condition (not cure). Sadly, there is no magic fix for HLHS.
Over the next couple months, we will be educating ourselves more on this condition. We have already had to change hospitals and all of our original plans. We are now members of the Little Mended Hearts organization and plan to be advocates of the American Heart Association and CMH to bring CHD & HLHS awareness to friends, family, and the public no matter the fate of our baby girl.

Oddly enough, when our daughter arrives she may be born during the national CHD awareness week February 7th - 14th. Kaleigh is set to be induced at 39 weeks on February 6th, 2017.
See updates for more information.
Remington’s Story:
On October 24th, 2016, Kaleigh Craft and I went to a scheduled ultrasound during which we were informed that our baby (Remington Craft) had a Congenital Heart Defect. We 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 Kaleigh and I. Dr. Swanson regretfully informed us that our unborn daughter did, in fact, have a fatal Congenital Heart Defect. It is one the worst types called Hypoplastic Left Heart Syndrome (meaning she essentially has half a heart).
HLHS is NOT curable and has no known cause.
Dr. Swanson and her team informed us of our options including Comfort Care (allowing the baby to be born and to naturally pass away within a few days) or undergo a series of 3 open heart surgeries by the time she is 3 years old. (Norwood procedure- around 1 week old, Glenn procedure- 4-6 months old, and Fontan procedure- 2-3 years old).
The surgeries would entail long term stay at Children's Mercy and constant monitoring of baby Remington during her stay and afterward. We will be utilizing the CHAMP (Cardiac High Acuity Monitoring Program) team who will monitor Remington from home between her first and second open heart surgeries.
New procedures are being conducted, but as of right now only a few HLHS patients have survived into their early 30's and many have needed heart transplants.
Thankfully, Kaleigh has been granted the ability to deliver at Children's Mercy, which is a rare opportunity due to the hospital being meant for children. This way Remington will get the special care that she needs.
HLHS is extremely rare. HLHS is only seen in 1 out of every 4,344 babies.
Kaleigh is a stay at home Mom, but after the baby is born she will be staying in the hospital for an extended period of time. We will need to find childcare for two of our three kids (Kaiden, Addisyn, & Gracelyn) while I work. We 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 in the future.
Remington will undergo her first surgery called the Norwood procedure within her first week of life. She will need two more surgeries to treat the condition (not cure). Sadly, there is no magic fix for HLHS.
Over the next couple months, we will be educating ourselves more on this condition. We have already had to change hospitals and all of our original plans. We are now members of the Little Mended Hearts organization and plan to be advocates of the American Heart Association and CMH to bring CHD & HLHS awareness to friends, family, and the public no matter the fate of our baby girl.
Oddly enough, when our daughter arrives she may be born during the national CHD awareness week February 7th - 14th. Kaleigh is set to be induced at 39 weeks on February 6th, 2017.
See updates for more information.
Organizer
Remington’s Heart
Organizer
Belton, MO
