By Lancaster resident and loving mother Destiney Smith.
In December, I found out that I was pregnant with my first child. I had what was called a high-risk pregnancy, because I wasn’t able to hold down many foods and I was losing weight instead of gaining. I had extreme morning sickness as well. The multiple medications that my doctors were prescribing were not working, and my doctors were concerned.
When I went in for my 20-week ultrasound, I found out that I was having a baby girl. I was very excited because that was exactly what I wanted to hear. Less than a week later, I got a phone call from my doctor saying they wanted me to see a perinatologist (high-risk doctor) because they saw some abnormalities at my 20-week ultrasound, which were soft markers for Down syndrome. I made the appointment for the next week, which wasn’t soon enough for me to find out what was going on with my daughter.
The perinatologist told me that Angela was very small for her gestational age, she had an extra digit on one of her hands, her stomach bubble was absent, she had a possible cleft lip and pallet, her heart looked like it had a hole in it, and that it could mean a type of syndrome because she always kept her fist clenched. At one point, I remember her saying that it could be a syndrome that she could not survive. I was devastated hearing this news about my daughter, but at my next ultrasound she gave us thumbs up! This is how I knew that my daughter would be a fighter.
As I continued my weekly checkups, my perinatologist suggested that I do amniocenteses. I respectfully declined because I already had a high risk pregnancy and didn’t want to further the chances of a miscarriage. My perinatologist referred me to have a [labor] induction on August 5 in Los Angeles, because that was the closest place that had the level of care my daughter would need once she was born. A social worker sent in a referral for temporary housing at the Los Angeles Ronald McDonald house, so I could be close to the hospital before I delivered.
I delivered Angela on Tuesday, August 6 at 12 p.m. and held her in my arms just long enough to take two photos. Then the Neonatal Intensive Care Unit team whisked her away to the NICU. I later found out that the cord was wrapped around her neck, and her heart rate was going down as I was delivering her. I found out about an hour later that she was five pounds and three ounces and had a cleft lip and pallet as well as the extra digit on her hand. I was able to see her about five hours later when the NICU team cleared me to see her.
A few days after Angela was born, the Genetic counselor came to my bedside and told me that Angela had what was called Mosaic Trisomy 13 (Patu Syndrome), which is deemed to be incompatible with life. My heart was broken and my eyes filled with tears. I had many questions that the geneticist couldn’t really answer because I was told this chromosome abnormality is so rare. The only thing he was able to tell me is that my precious daughter Angela probably wouldn’t live past a few days, a few months, maybe even her first birthday. He mentioned words such as never being able to walk, talk, and severe mental retardation.
Can you imagine being told this news about your own child?
I was in shock and total disbelief that my daughter could have these things wrong with her. This prompted me to do some research of my own. I found support groups online where I could talk to other moms impacted by their child’s diagnosis of Trisomy 13, 18, and or 21.
Mosaic Trisomy 13 is a chromosomal abnormality that does a lot of different things to the body,such as heart defects, kidney problems, neurological problems, bone disorders, respiratory problems, as well as many others. Between 1 and 1,000 and 1 and 21,700 babies are born with this condition, and 95% are miscarried or stillborn. These are the types of things that I was able to find out from other moms as well as through online research. Those moms and their stories gave me hope that Angela was going to be a fighter and live past what the genetic counselor told me.
After 15 days of being in the Neonatal Intensive Care Unit at four pounds and 12 ounces, Angela was able to come home to Lancaster. She had already lived past the few days they said that she might have had.
Five days later, she was rushed to Antelope Valley Hospital because she stopped breathing while I was feeding her and had to be resuscitated. We were able to have a police escort to the hospital in the ambulance. The next day she was air lifted back to a Los Angeles hospital, where she was later diagnosed with a floppy air way and Central Apnea. Following this diagnosis, they were able to do surgeries for a Tracheostomy and g-tube. Shortly after, they placed her on a ventilator to help her breathe at minimal settings.
Angela is currently in the hospital awaiting a weight gain to be sent home on the ventilator. She continues to prove her doctors wrong by being here today and surpassing their expectations. My daughter, along with many others, are examples that prove children with Trisomy 13 and 18 are compatible with life! To find out more about Angela and follow her journey, please visit her Facebook page at www.facebook.com/prayersforbabyangela or go to www.gofundme.com/teamangela.
Disclaimer: The views expressed in this article are the author’s own and do not necessarily reflect the views of The AV Times.
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