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Amber Rojas was excited to welcome a new baby, but she realized almost immediately that her newborn had Down syndrome and would need special care.
Amber Rojas, her husband Fernando, and their four children felt ready — well, as ready as you can ever be — for baby number five.
The family, which lives in Cedar Hill, Texas, includes 10-year-old Xavier, 8-year-old twins Kaydence and Zayden, and toddler Evra, who was about to turn 2.
In lieu of a baby shower, they had opted to use a birth photographer. And Amber's prenatal care and ultrasounds had not detected any issues. The one planned surprise? They had decided to not find out the baby’s gender ahead of time. With two boys and two girls, it was okay to have a little uncertainty, although everyone seemed sure it would be a boy.
So when the first signs of labor started at 2 a.m. a week or so before her due date, the Rojas family bundled everyone into the car so they could be together at the birthing center Amber had used for her previous deliveries.
At the birthing center, Amber’s contractions stalled for a few hours. But as she paced outside the center, they came on quickly. “I almost didn’t think I was going to make it back into the birth center my contractions were coming so hard and so fast,” she said.
Birth Unscripted / Via birthunscripted.com
The birth happened so quickly it was a bit of a surprise, and then Amber realized that something was different — her newborn might have Down syndrome.
“It was like this thing came over me and I could not help it, my body was pushing the baby out,” Rojas said. “And next thing I knew she was out and in my arms.”
“When I picked her up out of the water I could literally see it, I could see it in her face,” said Rojas. “I looked down and was like ‘Oh my gosh, our baby has Down syndrome’.”
Down syndrome is caused by a trisomy 21, or three sets of chromosome when there are normally two. This can result in certain physical characteristics like a flatter facial profile, an upward slant of the eyes, a deep crease in the palm of the hand, and low muscle tone.
And then Rojas saw that the baby — Amadeus Reign Rojas, nicknamed Ami — was also a girl. Rojas was “super excited,” because her last baby had been a girl and she “was so grateful it was another girl so they could grow up together."
Birth Unscripted / Via birthunscripted.com
While Rojas suspected that Ami had Down syndrome, at first, no one said anything about it in the delivery room.
“I just kept looking at here and thinking why is no one mentioning that she could have Down syndrome?” Rojas said. “Now I know there are some people who don’t know their children have Down syndrome for weeks after.”
Finally, the midwife did let her know that they should take Ami to the hospital for further evaluation.
“She said I don’t want you to be worried, but your daughter has some soft markers for Down syndrome, and when she said it, I knew in my head that I knew it,” said Rojas. “Another reason they also brought it up is that she had a low resting heart rate.”
About half of babies with Down syndrome are born with a heart defect that may or may not need surgical repair. The low resting heart rate suggested that Ami might be one of them.
After a series of tests at the hospital, it was determined that Ami did indeed have a heart problem, and that she needed the surgery sometime in the next few months. “That was very scary just like it would be for any mom, even a mom without a baby with Down syndrome,” Rojas said.
Birth Unscripted / Via birthunscripted.com
Aside from Ami's heart defect, Down syndrome can make babies vulnerable to other health problems.
Before she could have surgery though, Ami, who was born in September, contracted respiratory syncytial virus (RSV). RSV is usually a mild respiratory infection with a quick recovery, but it can be a dangerous in newborns and other vulnerable people. Ami spent 20 days in the hospital in December.
“That to me was probably the scariest — seeing your daughter struggling to breathe so hard from a respiratory problem and then to have a heart defect on top of that,” Rojas said. “We actually spent Christmas in the hospital.”
Birth Unscripted / Via birthunscripted.com
But the family had tremendous support from family and friends.
Ami recovered from the bout of RSV, and finally had her open-heart surgery in February to repair the cardiac defect. The family used the hashtag #Ami-tourage (Ami’s entourage) for people who wanted to offer support.
“It helped me go through that whole day knowing that there were so many people rallying around her and us through the surgery,” Rojas said. “It just gave me a peace of mind and confidence that we were going to be okay, because unfortunately not all babies make it through that surgery.”
instagram.com / Via Instagram: @justwhenyouthinkshesdown
Ami came home from the hospital earlier this week and is doing great.
The doctors told the family that they would see a big improvement after the surgery and that seems to be the case with Ami, Rojas said.
“She is doing so good. It’s amazing to have her actually be the baby she is supposed to be,” said Rojas. She can breathe better, and isn’t constantly asleep as she was before the treatment.
The family is looking forward to Ami’s first laugh. “Babies with Down syndrome, because of the low tone they don’t even smile as fast as a typical baby would and being a mom those are one of those things you look for,” said Rojas.
“It takes about two months for them to actually smile at you. We have yet to even get a laugh from her," said Rojas. "She hasn’t laughed but we can’t wait. We work really hard to get those smiles.”
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