By Scott Thompson
MEET THE amazing couple who were elated to discover they would be having twin girls regardless of their Down’s syndrome diagnosis and who are now spreading their message of acceptance to other parents.
Stay-at-home mother, Rachael Prescott (29) and her husband, Cody Prescott (32) from Salem, Oregon, USA, have four beautiful children. Together they have two sons, Easton (5) and Hudson (3) and two very special 15-month-old twin girls, Annette who they call Nettie and Charlotte who is known as Lottie.
At 15 weeks into her third pregnancy the couple found out that they were having twins. Cody was elated but Rachael felt unprepared as she knew there would be more monitoring and risks involved.
They were told from ultrasounds that Lottie had a heart defect known as atrioventricular septal defect (AVSD) which affects the blood flow from the chambers. Although they were aware of a possible link between AVSD and Down’s syndrome, they decided to refuse further tests as it wouldn’t make any difference to the love they would have for their twins.
The twins were born on February 1, 2018 and were diagnosed with Trisomy 21, the most common type of Down’s syndrome (DS).
Nettie had an atrial septal defect (ASD) which is a small hole in the wall between the two upper chambers of the heart which healed on its own after she was born. However, Lottie had AVSD, and needed open heart surgery. The requirement for heart surgery was for her to weigh 12 lb or be six months old. Due to her heart condition she was unable to gain enough weight, so at just four months old she had to have an operation to close her PDA, sealing a persistent opening between the two major blood vessels leading from the heart.
Having already undergone heart surgery with their son Hudson when he was two, they were nervous to repeat the experience again.
“Our first son Easton has no heart defects, but Hudson has a valve defect, an ASD and an VSD. Our experience with him was stressful, however it turned out to be very useful as it prepared us somewhat for Lottie’s surgery, which was a completely different monster,” Rachael said.
“When we found out we were having twins Cody felt lifted. However, I knew another child meant a more monitored pregnancy and risky labour, and so I felt less in control and very unprepared.
“Even after doctors discovered our girls each had heart defects in utero, we refused testing. We were told the defect found in Lottie, an AVSD, is found in 50 percent of children with DS. We weren’t bothered with the possibility of Down’s syndrome, for knew we would love our girls either way.
“We did however find out their gender. We were just far too excited to find out.
“Unlike our first two children I needed to be induced and hooked up to a monitor that didn’t allow leaving the bedside. The girls were born in the operating room, and I felt blessed as there were no birthing complications and I was able to deliver naturally. And they came out just two minutes apart.
“The girls were quickly diagnosed as having DS, and they were greeted with celebration.
“They both have Trisomy 21 which is the most common form of DS, and it is present when there are three copies of the 21st chromosome, rather than two.
“While Nettie’s heart defect, an ASD, resolved itself after birth, closing with growth, Lottie’s heart would not be able to, being that an AVSD requires completely reconstructing the heart, through an intense open-heart surgery procedure. Our little girl needed to reach a weight requirement of 12 pounds or six months of age to undergo this surgery.
“She wasn’t able to gain the necessary weight on her own, and so at four months old she went in to have a PDA closure, stopping one leak of blood in her heart, to help give her a boost toward her goal.
“When Lottie finally had surgery, she encountered many problems, including sickness both bacterial and viral, multiple organs damaged, a collapsed lung, chylothorax, pulmonary hypertension and a miss-fitted ET tube. This removed the typical road to recovery from our sight.
“We reached out for prayer, and the world responded; friends, family, acquaintances, and complete strangers blanketing our little girl with petitions to recover in health. Mountains were moved, her lung inflated, medications decreased, and after 35 days, we were elated to take our baby home.”
Now the girls are home acting as any other babies, crawling around, making messes, and playing with their brothers and dog, Max. Nettie doesn’t require any medication at all, and Lottie only needs to take Synthroid for hypothyroid.
“After Miss Lottie’s surgery she was on so many medications. It was very difficult for her coming off of so many narcotics, but now she only takes a Synthroid to treat hypothyroidism,” Rachael said.
“They are two bouncy, fun, beautiful, crawling babies, who love playing with their older brothers and fluffy dog Max.
“Lottie is observant, picking up quickly on sign language and communication, whereas Nettie leads in physical development, now cruising around our living room, and free standing.
“They are both spectacularly skilled at stealing our hearts and those of the world.”
Rachael shares her family’s story to 61K followers on Instagram @doublingdownmom to spread awareness about parenting children with Down’s syndrome.
She stressed that Down’s syndrome should be celebrated, and that the majority of problems are in the public’s perception of it.
“We have loved every moment with our daughters, and they are the lights in our lives. DS is nothing to fear, and everything to celebrate. The only difficult part in parenting children with DS, is that the rest of the world has yet to understand the beauty and joy they radiate,” Rachael said.
“There are negative stigmas that have led those who lack exposure to this people group to incorrect assumptions and imposing limitations on these individuals. And this is why we share our story. Society needs to turn from eradicating people with DS. We need to make a shift to teaching DS children that they can have the same love and desire to live life to the fullest as anyone else.
“My advice to other expectant parents: cling to hope through any medical hurdles and to joy always. Celebrate your children. Never hesitate to proclaim their worth and show the rest of the world that DS is not a defect- it is a blessing.”
A link to the contributor’s Instagram.