Meet Charlotte & Karder
The “Built for Life” design is inspired by Charlotte and Karder, who share a rare diagnosis and whose families were both told by doctors that their children were “incompatible with life.” But thankfully that message was never received by Charlotte and Karder as they’ve battled through incredible odds to bring joy to everyone they meet. Forget incompatible with life, these two were Built for Life!
Every purchase in September will go toward helping Charlotte’s home be remodeled with a more accessible bathroom and the purchase of an adaptive stroller for Karder.
Age 4 from Malinta, OH
In 2018, Hailey and Nick Nusbaum began starting their family and were excited to find out they were having a baby girl. Everything was typical up until November when an ultrasound showed that there was an issue with the baby’s heart along with signs of a wrist contracture. The couple was referred to the maternal-fetal department in Toledo, Ohio where they received a 3D ultrasound for more answers.
During this ultrasound, Hailey and Nick learned that their baby had a hole in her heart, and they were advised to get genetic testing. As the couple awaited the results, the holidays came and went, but shortly into the new year, the couple received a call from their doctor to come in that afternoon.
“I remember waiting and waiting with my sister in the exam room until the doctors finally asked me to go into the office. Immediately my stomach dropped. The doctor told us that my baby had Trisomy 18. At first, I wasn’t too concerned, but the doctor told me, ‘no, it is incompatible with life, there’s no chance she survives.’ I was shocked that even if we did make it to term, that we would only get to say hello. I listened to the options, left the office, and began sobbing as I called Nick to tell him the news.”
Trisomy 18, also known as Edward’s syndrome, is a rare disorder that occurs in approximately 1 in 7,000 live births and 1 in 2,500 pregnancies and is caused by extra copies of the 18th chromosome.
The weeks leading up to Hailey’s scheduled c-section, the couple created a birth plan with Sufficient Grace Ministries and decided on comfort care. Before even getting to meet their baby girl, the couple planned a funeral believing only the worst was to happen since that’s what they were told continuously.
Hailey shares, “I had my good days and my bad days leading up to delivery but once the day came, I had a sense of calm that morning. I feel like that morning I finally truly believed and trusted that whatever God had planned was going to happen.”
On April 4, 2018, Charlotte came into this world a fighter. Since the couple chose comfort care, they were given all the time to love and snuggle on Charlotte. One minute turned to one hour which turned to one day, and soon after the couple was being sent home on hospice.
“As we all know now, our girl was not going to stop fighting to be in this world. It was an overwhelming feeling at first because we were not prepared to actually take Charlotte home. We had nothing at our house. We initially bought the crib, but once we were given a prognosis, we stopped buying things. We are so thankful to our support system because during those days our family and coworkers really helped us get the things we needed.”
A month into bringing Charlotte home, she went unresponsive and ended up spending a month in the PICU. After weighing the cost of having a nurse who was willing to work with Charlotte’s medical complexities, the couple decided that Nick would stay home and take care of their little one while Hailey continued to work as a high school intervention teacher.
Today Charlotte is four-years-old and is dotingly known as being a sassy, sweet, and honorary little girl. She enjoys swinging, laying on the floor, listening to music and watching shows like Bluey. By far, Charlotte’s best friend is her grandpa. Hailey shares that since day one, he was the only one who could get her to go to sleep or eat.
With Trisomy 18, there are a lot of other medical complexities that occur. Charlotte has the support of a bipap, oxygen, feeding tube, wheelchair, and stander. Charlotte attends physical therapy, occupational therapy, and speech therapy. She is working hard in physical therapy to sit up independently. She has even sat up unassisted for two minutes which is a huge win for Charlotte.
Some other medical complexities include scoliosis and hypotonia. The hypotonia in Charlotte’s shoulders makes it unpleasant for her to use her arms for anything, but as Hailey shares, Charlotte’s legs and abs are some of the strongest things she has ever seen.
Hailey shares that a lot of kids with Trisomy 18 do get their hearts repaired, but ironically for Charlotte, the one hole in her heart is helping with other things so they’ll continue to keep an eye on it.
Reflecting back on the diagnosis day, Hailey shares,
“Looking back, it’s hard not to be annoyed. We were given a straight answer with zero hope. Everything that doctors have learned about kids with Trisomy 18 is that they don’t have a chance of life. After Charlotte was born, I found a lot of kids with Trisomy 18. She’s doing really well, and it has even encouraged our doctor to talk with other medical professionals about the language used when delivering news about different diagnoses.”
Adjusting to our normal ebbs and flows with Charlotte is the only thing Nick and Hailey have known when it comes to parenting, but it doesn’t mean it’s easy,
“Every choice we make for Charlotte is never simple; there are always many other choices and situations that need to be thought through before we get to the final decision. Even leaving the house, we have to determine accessibility and preparations for tragic situations. It can be draining and the most frustrating part is knowing there are some things she will struggle to or may never get to experience because of limited accessibility,” Hailey shares, “Although Charlotte’s world might include many tools, therapies, and specialists, it is also a world full of blessing and knowing nothing but love.”
Time to get loud shouters!
Throughout the month of September we will be shouting loud for Charlotte!
So click here to shop now where every purchase in September will go toward helping Charlotte’s home be remodeled with a more accessible bathroom.
To help support kids like Charlotte every month, click here to start a monthly subscription.
Age 9 from Elm Creek, NE
On September 18, 2012, Lacey and Mitch Williams headed to the hospital in anticipation of their first son, Karder. Around 10 p.m. that night, Lacey awoke to medical staff coming in and telling her that with every contraction, the baby’s heart rate was dropping. Lacey was given a shot to slow the contractions down till a doctor could come in, but even till the next morning, Karder’s heart continued to drop. Worried about the baby’s health, the doctor decided to perform an emergency c-section and prepared Lacey and Mitch for the possibility of Karder being taken to the NICU.
Shortly after Karder was born, a nurse asked Mitch if he’d like to come over and meet his son. The moment Mitch first saw Karder he instantly noticed his arms were deformed and his color was gray. The doctor stopped Mitch and said, “I need you to go and sit down, don’t say anything to Lacey while we finish the c-section.”
While Lacey was getting tended to, Karder was taken to the NICU for oxygen. A couple hours go by until Mitch and the family join Lacey back in the room. Lacey recalls, “When everyone came in, I could tell that they had been crying, but I figured it was just a normal response. Karder is the first grandbaby on both sides.”
The doctor sat the family down and shared that along with Karder’s arms being deformed, a test showed some concerns about his heart.
“Mitch and I just sat there for a couple of hours processing, and when I was finally able to sit up, I got to hold Karder for the first time. Once the results came back, doctors believed that Karder had two to three holes in his heart and needed to be transferred to the Children’s Hospital in Omaha, Nebraska” Lacey shares.
While Lacey was recovering from the c-section in North Platte, Mitch and his parents packed their bags to meet Karder in Omaha four hours away. The next afternoon, Mitch was holding Karder when a Geneticist came in and bluntly shared that they did some genetic testing and it confirmed Karder has a rare chromosomal disorder called Trisomy 18. The doctor continued to say this diagnosis is considered to be incompatible with life and there is a 50% chance he wouldn’t live past a week and only a 5% chance he would live to be one year old.
During this, Lacey was still in North Platte and only knew of Karder’s heart condition. As soon as she was discharged, she went to Omaha to see Karder. “After spending several hours with him, I was wanting to go to the hotel and rest, but Mitch insisted that I hold Karder for as long as I could. I was exhausted and didn’t understand why. That evening, we went to the hotel room and Mitch broke the news about Karder’s diagnosis. I was in shock but remember telling Mitch that I don’t need 5%, I just need that 1% chance that he will make it.”
That night, the couple prepared for the next day where they would meet with a team of doctors to decide Karder’s life plan. The morning came around and Lacey and Mitch were in a boardroom with a GI specialist, pulmonologist, hospitalist, social worker, and geneticist to make hard decisions concerning quality of life versus quantity of life. When the decision regarding Karder’s heart came up, the cardiologist said that while he could fix it, Karder would not wake up from the anesthesia because his lungs were not developed enough.
The couple decided against heart surgery and went through the motions of no longer being under medical care but hospice care. To be closer to family, Lacey and Mitch requested to be transported back to their home hospital. While they waited for insurance to get on board, Karder was put on heart medicine to keep his heart valve open for blood flow. Doctors believed that this would give the family more time with Karder, but that they could only have Karder on the medicine for so long.
During this time, the couple celebrated their one year anniversary with their eight-day-old son while being transferred back to their home hospital. The doctor who had delivered Karder converted a hospital room into a hospice room with all the amenities. Over the next couple of days, Mitch and Lacey were surrounded by loved ones who came to visit Karder.
The day came when doctors stopped Karder’s heart medicine, turned off his oxygen and took all the monitors off of him. Lacey shares, “Our doctor said it could be two hours or it could be two days. Mitch and I just sat on this rollout bed holding him for six hours, not saying a word.”
One day went by, two went by and then on the third day, Karder continued to fight to stay in the world. The doctors were perplexed. After two weeks of being in the hospital, the couple decided they wanted to take Karder home and switched to at-home hospice care.
“We celebrated Karder’s first month birthday because we didn’t know how long he would be with us. We celebrated all of his firsts–first snow storm, first thanksgiving, first Christmas. We just kept holding our breath, preparing for the end. Everyday was another blessing and more time than we ever expected. We never planned too far ahead. I wouldn’t even buy diapers until we were down to our last five. I didn’t buy next season’s clothes until it came.”
Five months into Karder’s life, he caught a cold and was eventually taken to the ER for heart failure. Since Karder was technically on hospice, a DNR was put in place. Mitch and Lacey fought with the medical staff to get their son the care he needed, but were met with hesitations.
“The nurse practitioner put her hand on my shoulder and said, ‘you’ve gotten really attached to him haven’t you? You have a DNR in place, so we aren’t able to resuscitate him.’ I told her to rip up the DNR and give him oxygen immediately.”
The family was once again rushed to the Children’s Hospital in Omaha and were confronted with more news. To the family’s relief, the doctor told the couple that Karder was in fact NOT in heart failure and that his heart was actually healing itself. One hole had already closed and the second was on its way. It was during this time, doctors learned that Karder actually had an infection called Respiratory Syncytial Virus (RSV) that could be managed with oxygen.
“That was the moment when I finally took a huge breath for the first time in five months. We changed our outlook at that point. I scheduled family photos to celebrate Karder’s six months on earth, bought diapers in bulk and started to get the next season’s clothes. I never let us get too far ahead, but it didn’t seem hopeless.”
At seven months old, Karder got his g-tube and started doing physical and occupational therapy. By the time Karder turned one, the family’s doctor shared, “With Karder being one year old, the textbook doesn’t tell me how to treat him. How do you want me to treat him?”
The family finally felt like they were paving their own path.
Today, Karder is nine years old and will be celebrating his tenth birthday this September. Reflecting on the turbulent journey, Lacey shares, “We were originally told ten days, and now here we are, going on ten years. We were told Karder would be deaf, blind, and never walk but here Karder is doing amazing with minimal assistance. He doesn’t talk yet but says a thousand words with his eyes.”
Karder loves school and was excited to start fourth grade along with his peers who he has been in school with since the very beginning. He loves art and PE. When he is not in school, Karder loves going to the lake and hanging out with his two younger brothers, Knox and Kowen.
To this day, Karder has still never had heart surgery. His heart continues to heal on its own to the point where surgery is no longer needed. Lacey shares, “We just had a check up with our cardiologist in March and he confirmed everything looks good! We won’t have to see him again for another three years.”
Karder also attends weekly therapy sessions for occupational, physical, speech, and feeding therapy. While the progress doesn’t happen quickly, the family shares that it is exciting to look back over the years and see Karder’s growth. He went from not wanting to stand with assistance at two-years-old to now standing independently and even taking a few unassisted steps.
When times get tough, Lacey and Mitch reflect on something one of their doctors said, “You have loved Karder to life.” This is the encouragement they hold onto.
Time to get loud shouters!
Throughout the month of September we will be shouting loud for Karder!
So click here to shop now where every purchase in September will be used to help purchase an adaptive stroller for Karder.
To help support kids like Karder every month, click here to start a monthly subscription.