It was noticed that the baby had an arrhythmia at 12 weeks gestation and that her stomach was located on the right side of her abdomen at 16 weeks gestation. It was at this appointment we found out we were having a second daughter, which we named Emily Grace. Emily Grace was prenatally diagnosed, at 22 weeks gestation, with a very rare defect called Heterotaxy Syndrome. There are only 4 in a million people diagnosed with this syndrome. There are no chromosomal or genetic connections that have been found to cause this. With heterotaxy, there are no two babies alike.
This syndrome has caused some of Emily's organs to be malformed and misplaced, which does include several Congenital Heart Defects (CHD's). Emily's heart is not structured correctly & the veins, valves, and artery's are not positioned in the correct places. We were told she had a 5% chance of making it to birth, preparing us for a stillborn. The dr's also said, if she made it to birth, she would most likely pass away within minutes to hours after birth.
Emily's diagnosis: Heterotaxy Syndrome -
Interrupted IVC to left SVC
Common AV Canal Defect - mildly unbalanced
Tetralogy of Fallot
Sinus Node Dysfunction
Complete Heart block (pacemaker placed)
Partial Situs Inverses:
Right sided stomach
Emily Grace is a very special baby. Even though we live in Louisiana, we chose to deliver her at Texas Children's Hospital (TCH) in Houston to give her the best chance at life. She was born on September 16, 2013 and was well taken care of by a specialized team of Doctors. She had her pacemaker surgery around 36 hours old. Unfortunately, the pacemaker eroded through the incision. At almost 1 month old, Emily was taken back for emergency surgery to remove the original pacemaker and have a new one placed. She spent the majority of her first two months in the hospital with me by her side.
Emily Grace will be having her open heart surgery (OHS) this summer (2014) in Boston, MA. The plan is for her to have a bi-ventricular repair. Boston Children's Hospital (BCH) is the #1 pediatric hospital in the US. They have conducted many bi-vent surgeries and have the highest success rates. We feel that this is the best place with the best team of doctors to take care of our precious baby. In the mean time, we are traveling every 4-6 weeks to Texas Children's Hospital for check-up's, echocardiogram's, EKG's, pacemaker checks, and whatever else is needed.
We feel that The Lord is continuing to open doors and is guiding us in the right direction. Every donation will go toward Emily's medical and travel expenses for her open heart surgery. We are overwhelmed by the love and support from everyone. Thank you all so much for helping our family in a time of need. With every thought, prayer, and donation, you are touching the heart of our precious daughter and we cannot thank you enough.
With all of our love,
Greg & Dana Johnson
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