Kit's fight with CHD
Donation protected
She looked perfect to me at the 20 week anatomy ultrasound--just like her four older sisters--so when my OB told me that something was wrong, that we shouldn't expect this baby to survive to term, we were shocked. We had brought our two oldest girls with us, planning on decorating cupcakes with pink or blue sprinkles after we found out the gender, so we could share the news and celebrate with friends and family. We spent the day in waiting and ultrasound rooms, expecting the worst, expecting our baby to die.
In the weeks that followed, our fifth baby girl, Kit, was diagnosed with a severe congenital heart defect, Tetralogy of Fallot with Pulmonary Atresia and MAPCAS , caused by a genetic deletion, 22q11.2ds, also known as Digeorge syndrome. The doctors said it was a random deletion and random defect--that CHDs happen in 1 in 100 births, 22q in about 1 in 2000 (estimated), and MAPCAS , the most complex aspect of her condition, in about 1, in 4000.
As her due date grew closer, we frequented the hospital for monitoring, but really little was known about how well she would do because of the nature of MAPCAS and 22q--both are highly variable, a spectrum. TOF is a fairly common defect, but MAPCAS is much more rare--our large local university hospital only sees about 3 patients a year with MAPCAS.
Kathleen Felicity, or "Kit" as we call her, was born on May 22, 2019, at 8:48pm, 39 weeks, via induction. She was so much bigger than the original ultrasound tech had guessed-- 7lb 7oz, 19 ad 3/4 inches. After she was born, she was rushed to the NICU to be given medicine that would keep the PDA in her heart open--without that medicine, they were not sure if she could survive.
We spent 17 days in the NICU, as Kit was taken off oxygen and the heart medication, but struggled to gain weight. Eventually she was able to go home with a feeding tube and medications to help with her hypocalcemia (caused by 22q). Then she was able to go home, to grow big enough for her open heart surgery.
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Babies with TOF/PA/MAPCAS do not live past one year old without surgical intervention; with intervention, they have about a 70% chance of survival.
Kit is scheduled for her life-saving open heart surgery, a unifocalization, in November. We will be traveling from St. Louis to Palo Alto, CA, so that she can have her first big surgery at the hospital that sees more patients with MAPCAS than any other hospital in the world. Her doctors in California believe she is a good candidate for a single unifocalization surgery vs. a multi-stage unifocalization (3-4 surgeries) that would have been performed at our local hospital. Kit's doctors estimate 2 to 4 weeks recovery time in California, barring any major complications.
We started this GoFundMe to help with medical bills, travel expenses, and time off work for her upcoming surgery--any little bit helps! Please also consider supporting us through your thoughts and prayers for Kit's health and recovery.
If you would like to follow along with updates, you can on Facebook or on instagram ati_heart_kit
Thank you for supporting our family and Kit as she fights CHD!
In the weeks that followed, our fifth baby girl, Kit, was diagnosed with a severe congenital heart defect, Tetralogy of Fallot with Pulmonary Atresia and MAPCAS , caused by a genetic deletion, 22q11.2ds, also known as Digeorge syndrome. The doctors said it was a random deletion and random defect--that CHDs happen in 1 in 100 births, 22q in about 1 in 2000 (estimated), and MAPCAS , the most complex aspect of her condition, in about 1, in 4000.
As her due date grew closer, we frequented the hospital for monitoring, but really little was known about how well she would do because of the nature of MAPCAS and 22q--both are highly variable, a spectrum. TOF is a fairly common defect, but MAPCAS is much more rare--our large local university hospital only sees about 3 patients a year with MAPCAS.
Kathleen Felicity, or "Kit" as we call her, was born on May 22, 2019, at 8:48pm, 39 weeks, via induction. She was so much bigger than the original ultrasound tech had guessed-- 7lb 7oz, 19 ad 3/4 inches. After she was born, she was rushed to the NICU to be given medicine that would keep the PDA in her heart open--without that medicine, they were not sure if she could survive.
We spent 17 days in the NICU, as Kit was taken off oxygen and the heart medication, but struggled to gain weight. Eventually she was able to go home with a feeding tube and medications to help with her hypocalcemia (caused by 22q). Then she was able to go home, to grow big enough for her open heart surgery.
~
Babies with TOF/PA/MAPCAS do not live past one year old without surgical intervention; with intervention, they have about a 70% chance of survival.
Kit is scheduled for her life-saving open heart surgery, a unifocalization, in November. We will be traveling from St. Louis to Palo Alto, CA, so that she can have her first big surgery at the hospital that sees more patients with MAPCAS than any other hospital in the world. Her doctors in California believe she is a good candidate for a single unifocalization surgery vs. a multi-stage unifocalization (3-4 surgeries) that would have been performed at our local hospital. Kit's doctors estimate 2 to 4 weeks recovery time in California, barring any major complications.
We started this GoFundMe to help with medical bills, travel expenses, and time off work for her upcoming surgery--any little bit helps! Please also consider supporting us through your thoughts and prayers for Kit's health and recovery.
If you would like to follow along with updates, you can on Facebook or on instagram ati_heart_kit
Thank you for supporting our family and Kit as she fights CHD!
Organiser
BryanandRenee Emerson
Organiser
O’Fallon, MO
