Helping Ja’laya’s Heart

Hi, my name is Kiarra. I am asking for help for my 2 month old baby girl. She has been through a lot her few months on earth, and I know God is not done with her yet.

Here’s our story….

 

Some of you may know, when my daughter was born she had respiratory issues, where she was on a C-Pap machine because she was breathing really fast and could not get it controlled on her own. She had to stay in the NICU until she was discharged. (Mostly on oxygen the whole time) So when she was discharged, her father and I thought this was her normal breathing.

 

Last month, she had went to the doctor to do more blood work because her newborn screening had came back abnormal and she could potentially have a disease called Lysosomal Storage. Lysosomal Storage Disease are inherited metabolic diseases that are characterized by an abnormal build-up of various toxic materials in the body’s cells as a result of enzyme deficiencies. There are nearly 50 of these disorders altogether, and they may affect different parts of the body, including the skeleton, brain, skin, heart, and central nervous system. Which could be very deadly.

 

Finally got her results back after so many foot sticks and agonizing wait, turns out it was something in her blood that triggered a false positive. Thank for God and all my prayer warriors, she was negative. She was healthy over all and had a small heart murmur…but you could barely hear it. So her doctor was sure that it was going to heal on it’s own.

 

Fast forward to Tuesday July 27th, we go in for a routine 2 month check up. Her doctor is going over her check list…Ja’laya hadn’t gained any weight from the month prior, she was breathing super fast and her heart murmur was loud. She didn’t like the direction her health was going. So she wanted to refer us to a cardiologist, but when she called to make an appointment they were on lunch. The whole thing wasn’t just sitting right with her…so she said let me call the ER.

 

She loved the doctor that was on duty as she felt comfortable, so she sent us straight there! They did an EKG, ultrasound and a X-ray. With all that, it was determined that Ja’laya has Atrioventricular Canal Defect (AV). This allows extra blood to flow to the lungs. The extra blood forces the heart to work too hard, causing the heart muscle to enlarge. Untreated, atrioventricular canal defect can cause heart failure and high blood pressure in the lungs. She has 2 holes in her heart that will require open heart surgery within the next few months (depending on if they can keep the fluid out of her lungs and if she can gain weight.. no date has been decided). She was hospitalized until that Friday. She will be on Lasix, a diuretic (water pill) to try and keep the fluid off of her and she has to have extra calories to her milk to help her gain weight.

 

Her surgery will be at UVA Children’s Hospital, which is in Charlottesville, Virginia. We will be there from 1-3 weeks, depending on how everything goes. I, her mother will have to take off work to make sure she’s straight and comfortable during her time of recovery.

 

The motivation for this GoFundMe campaign is to support Ja’laya’s recovery and assisting with bills, countless doctor visits, travel expenses for the family, and housing adjustments. Any donations will be greatly appreciated and all funds will go directly to Ja’laya.

 

Any donations are appreciated and we thank you all for your thoughtfulness and prayers. Please share.

 

-Kiarra & Ja’laya