A mom who worried that her second baby’s Down syndrome diagnosis would shatter her older child’s chances at bonding with her sister was quickly proved wrong when the baby was born. It was the mom’s preconceptions about Down syndrome that were shattered, and her girls share a love like no other.
Nikki Geib, 34, is a content creator and stay-at-home mom living in Madison, Wisconsin. She is married to Morgan Geib, 35, the business owner of a small manufacturing company, and the couple shares daughters Georgi, 4, and Millie, 2.
Nikki and Morgan were thrilled when Nikki conceived their second child, but after opting for genetic testing, they received an unexpected shock.
A Wave of Emotions
“[G]enetic testing seemed so standard and routine. ... In hindsight we should have asked more questions about it because we learned it can come with a lot of uncertainty,” Nikki told The Epoch Times. “A week later, I received an email that my results were in from the test, and I opened them up to read, ‘Positive for Trisomy 21.’”Nikki had no idea what this meant until she turned to the internet. Trisomy 21, meaning three copies of the 21st chromosome, indicated possible Down syndrome.
“I about fell to the floor in a wave of emotions I have never felt before: confusion, fear, anger,” she said. "When I got hold of my doctor, we learned the test meant that the baby had a 68 percent chance of having Down syndrome, but [they] also reminded me there was a 32 percent chance it didn’t, which was a poor way of sharing the news—we held on to that 32 percent hope.
“I didn’t know much about Down syndrome and didn’t know anyone personally who had it, but I ‘knew’ it was bad. I thought our lives were going to be over. All of our dreams: travel, retirement, a ‘normal family.’ Everything. I thought our life would now be dedicated to taking care of this child, who would struggle for their whole life. I only wish I knew then what I know now.”
Nikki’s mom went into “Mama Bear mode,” reminding her daughter that the baby would be loved no matter what. Morgan was supportive but took a lot of time to himself to digest his complex emotions.
Beautiful and Perfect
The couple moved forward with the pregnancy, praying that their baby would be among the 32 percent. They denied further testing, wanting to avoid the risks of amniocentesis.Nikki struggled until her due date as in the midst of the 2020 pandemic neither her husband nor family were allowed to accompany her to her many doctor’s appointments. Hers was considered a high-risk pregnancy, as the baby had a multi-cystic kidney and possible heart defect, and an issue with Nikki’s placenta meant the baby was growing at a slow rate.
“It was a scary time, knowing that at any of those ultrasounds they may have needed to make the call that the baby was better off on the outside than in my tummy,” Nikki said. “I ended up making it to 37 weeks, where it was decided I should be induced because of my high blood pressure.”
Baby Millie was born at the end of November 2020 weighing 4 pounds 15 ounces. Nurses held her in the air for proud Nikki to see before she was whisked away to the Neonatal Intensive Care Unit (NICU).
“She was beautiful and perfect, and I immediately knew she had Down syndrome; she didn’t look like her sister as a newborn,” Nikki said. “I will never forget looking over at my husband and I knew he knew too. I could see the disappointment in his eyes, as we both were holding onto that 32 percent chance of ‘hope,’ but he smiled at me and I knew we were going to move forward, loving her with all of our hearts and taking each day at a time.”
One night in the NICU for low blood sugar turned into 22 nights for Millie, who was having trouble feeding because of low muscle tone, a characteristic of Down syndrome. It was days before her parents saw Millie open her eyes. Nikki grew exhausted, driving an hour to and from the hospital every day and pumping breast milk to feed her baby.
“I had a very hard time bonding with her ... and because of COVID restrictions, we weren’t allowed to sleep there. After about two weeks of not seeing much improvement, we had our first experience of advocating for her, and asked to have her transferred to a Level 1 NICU at the Children’s Hospital.” Nikki said.
Smitten Sisters
“I was so nervous how Georgi was going to react,” Nikki said. “She was absolutely smitten. I will never forget the smile she had on her face seeing her sister for the first time. She never once asked about the tube over the next four weeks Millie had it in, except for once, when she thought maybe Millie needed a tissue!”
“Every milestone, or ‘Milliestone’ as we call them, is so special to us,” Nikki said. “Every physical achievement, every word, everything she overcomes is so exciting and rewarding! Maybe it’s because she needs to work a little harder ... but once they are achieved, I realize all of the patience is worth it.”
As for Millie and Georgi’s special bond, it has only grown stronger. Today, Nikki’s Instagram page is filled with heartwarming moments, smiles, and sisterly hugs. Nikki and Morgan’s preconceptions about Down syndrome have been turned on their heads.
At 2 years old, Millie has a transitional AV canal heart defect that may require surgery in the future. Her multi-cystic kidney was “dissolved by her body,” but her remaining kidney is compensating well. Nikki, who encourages both her kids to be curious and ask questions, hopes others will learn from their story.
“There are a lot of misconceptions. Most of them are ones that I thought, too!” she told The Epoch Times. “But I have learned that people with Down syndrome are smart, work hard, they can have jobs, live independently, even get married. If people and the society around them didn’t place so many barriers around them, but rather believed in their abilities and gave them opportunities, people with Down syndrome can go so far.
“Having a child with Down syndrome might be unexpected, it might come as a shock, but it is not a bad thing,” she said.
