“To be a mother is to decide forever to have your heart go walking around outside your body.”
I thought I was ready to be a mom. I read all the books. I got all the advice. I had all the onesies ready, the nursery painted, the binkies on standby.
I don’t think you can fully prepare for that moment when your baby is finally born. The second I saw my baby boy, my life was no longer mine. It was like my heart had split… and he was half of it. 14 years later, things are no different – now with two, precious sons. When they hurt, I hurt. When they experience joy, my heart explodes. Every decision I make, every plan I put in place, I consider what it all means to them. They are literally pieces of my heart, walking around outside of my body. And sometimes, when I feel like I’m losing all hope, I remind myself that as long as those two boys are happy and healthy, nothing else matters.
Then, I think of my friend, Betsy.
Betsy is our Event Manager at HDR. I have the privilege of working closely with her for executive meetings and events. There are very few people I know that are universally loved and respected by everyone who knows them; that’s Betsy. Her name at HDR is synonymous with high-quality work, professionalism, organization, positivity and kindness. She’s talented, kind, reliable, trustworthy, and she always has a smile and a hug.
She’s also one of the strongest people I know.
Betsy has two beautiful daughters. Her youngest, Claire, was born without fully functioning kidneys. Since her first ultrasound in January 2024, the Stannards’ lives have been filled with doctors, surgeries, diagnoses, prognoses and challenges.
“We went into the 20-week anatomy scan, not wanting to find out the gender,” Betsy told me recently. “When we were there, it took longer than I had remembered from my first pregnancy with Catherine. I just remember them continuing to look at things, and having a really long conversation with the doctor. They knew something was abnormal with her kidney.”
Betsy immediately began weekly appointments with a high-risk OBGYN. Before her baby was even born, she had in-utero surgery at Children’s Hospital Colorado, allowing doctors to place a shunt in the baby’s back to drain excess fluid from her tiny body. At 29 1/2 weeks, Betsy was admitted to the Methodist Women’s Hospital, where she stayed until she hit 36 weeks, to help her baby become strong enough to survive once she was born. Betsy worked remotely throughout that stay, saving her maternity leave and paid time off for her daughter once she arrived.
Claire James Stannard was born on April 29, 2024.
“We were so excited to hear her crying, because I knew that meant her lungs worked,” said Betsy. “Not knowing if she was going to be able to breathe on her own was so scary before that, so hearing it was exciting. I knew that she was going to be a fighter from the beginning.”
Doctors determined that one of Claire’s kidneys was multi-cystic; it had never formed correctly and was essentially just taking up space in her abdomen. Her other kidney was there, but did not filter toxins as most kidneys do. The diagnosis: Claire would need daily dialysis until she was old enough and strong enough for a kidney transplant.
“Prayed. Prayed so hard,” said Betsy. “She was born on a Monday. We moved her to Children’s on that Wednesday, and on Friday she had her first surgery where doctors removed her undeveloped right kidney, placed her peritoneal dialysis catheter, placed her feeding tube button (gastrostomy button), and placed her central line for routine lab draws.”
“We couldn’t pick her up and hold her for two weeks,” remembers Betsy. “This was to allow her dialysis catheter placement to heal. In this picture, she was 11 days old; I was so happy she was grabbing my finger!”
Claire’s first months of life were spent in the NICU at Omaha’s Children’s Hospital & Medical Center. Doctors and nurses had to find a perfect balance to provide Baby Claire nutrition, without flooding her body with fluids she couldn’t flush out. Betsy and her husband JJ learned how to hold their baby girl amid tubes and a dialysis machine, while also focusing on their toddler, Catherine, and unavoidable challenges with work leave and medical bills.
“Those couple of months, I didn’t get to spend time with her as a newborn,” said Betsy. “I was driving back and forth to a hospital and to daycare to pick up our 2-year old who had to then go and visit her sister in the hospital.”
“I prayed a lot, asking why me? Why do we have to endure this?” said Betsy. “I just knew God gave it to me for a reason, because he knows that I can handle it and knows that I have people around me that can help me stand on the days that are hard.”
Doctors estimated Claire would stay at Children’s for a year. She was ready to go home in September.
“She continued to grow and tolerated the dialysis like a champ,” said Betsy. “After four months, they felt she was strong enough to handle things at home. And Children’s Nebraska was so amazing and helpful giving us training and educating us to get through that.”
While it was great to be home together as a family, Claire’s care fell completely to Betsy and JJ. Betsy’s teammates at HDR collectively donated paid time off hours to Betsy, allowing her to take care of her baby girl.
“I was just so grateful that when we got to take her home, I could just focus on her for those couple of months and have that time with her,” said Betsy.
Any parent knows having a newborn is no picnic. It’s even harder when you have a toddler who also needs you. With a special needs child like Claire, Betsy and JJ had to learn a whole new home routine, and plan out a long list of surgeries and appointments needed to keep Claire on track for optimal growth and eventually, a transplant.
Just weeks after she left the NICU, Claire received a helmet, needed from her extended time lying down in the NICU. In October, Claire underwent surgery again for leg casts, needed to correct a dislocated hip and hip dysplasia. And every, single night, Betsy and JJ began the 45-minute process to set Claire up for a full night of her life-saving dialysis.
“I remember with Catherine, we could just grab her, bring her into our bed and watch a movie in the morning or just get up and go,” said Betsy. “With dialysis, you have to plan your entire day around making sure you get set up in the right amount of time. You have to think about, ‘ok, do I have something the next day?’ so we have the full 12 hours with preparation and dialysis, and then ‘what if she spits up or if she poops on her dressing?’ You have to change her, which takes another 45 minutes because diaper changes were so hard with her casts, and then build that extra time into your next day.”
Throughout every trial, every hospital stay, every doctor’s visit… Betsy and her family stayed positive.
Claire bloomed a smile that lit up every room she was part of. She began hitting new milestones like independent tummy time, crawling and standing, eating table foods, and playing with her big sister.
She turned 1 year old with her family as a happy, growing little girl, and one step closer to a kidney transplant. After nonstop visits to all kinds of specialists for additional scans and testing, Betsy and JJ received the news they had been waiting a year and half for: Claire was approved for surgery.
“The UNMC transplant team needs her to be a certain height and weight in order for her to receive a kidney,” said Betsy. “Her lungs look good, her heart looks good. We can see trends that she’s growing at a good rate, healthy and strong, and that there is enough room in her abdomen to receive a working kidney.”
To me, the finish line seems so very close for my amazing friend. In reality, this is just one more chapter in her family’s story. Doctors have approved Claire for a kidney transplant: now, they need to find a kidney.
On November 4, Betsy shared the above on her Facebook page: a photo of her joyful little girl with a simple plea, Help Claire Get a Kidney. The Stannards are asking anyone and everyone who hears their story to consider answering a brief questionnaire through the Nebraska Medical Center, all part of the process to find a potential living donor for Claire.
“It would change her life,” Betsy told me. “A kidney for Claire would mean more energy and overall health throughout her life, freedom from her daily 12-hour dialysis requirements, improved appetite and growth, the ability to travel with her family, and less time in hospitals for surgery, procedures and tests. For anyone considering this, even if you donate one of your kidneys you are not at higher risk of kidney failure. That’s not going to hold you back. You only need one – but she’s only going to get one.”
While promising, the road after transplant will be rocky for Claire and her family. This is major surgery; Claire will need 24/7 care for months after her transplant. Her recovery process will be significant, with a future of anti-rejection medications, clinic visits and tests. There’s always the possibility that a new kidney could fail, whether that be in 30 minutes or 30 years.
But Betsy chooses hope. She chooses positivity. She chooses gratitude.
Since I started at HDR in May of 2023, Betsy has become of my dearest colleagues and friends. She carries an aura of warmth and joy with her, and shares the beauty in her heart with everyone she meets. I see her smile in her daughters; the same light, the same happiness. I have known these past two years what her family has faced, but it wasn’t until we sat down to talk about Claire that I felt Betsy’s sorrow. It was the first time I’ve ever seen her cry, and it was a brief glimpse of her exhaustion, her pain for her baby girl and for all that her family has been through, and of the ongoing weight she carries as a mother who loves her child with every fiber of her being. As a fellow mom, who would turn the world upside down and sacrifice everything within me for my children, I could almost feel how heavy these last two years have had to have been for a woman who gives so much beauty and love to others. I would pray for any child to be healthy and strong, but there is truly no one more deserving of answered prayers than Betsy.
“I’m excited to see a more normal future for our family, hopefully soon,” said Betsy. “I hope Claire goes on and helps other people, whether it’s through understanding about this life that she’s had so far or could she help cure something in the future? I just think that she’s going to take this and do something good with it after she goes through all of this, whether she goes and becomes a doctor or nurse, a teacher, or even an event planner. I can just see her using this to try and help others with their future.”
Just like her momma. I have no idea how she does it – balancing so much, every day, on her incredibly strong shoulders – while never letting anyone know about her challenges. All we see is Betsy’s smile; all we feel is her warmth; and I would argue we could all learn from her inspiring attitude of joy and hope. All her two little girls are learning from their brave, strong Momma, is that no matter what life throws at you, surround yourself with people you love, and do everything you can to find joy every, single day you have.
“Just assume people are doing the absolute best that they can,” said Betsy. “You don’t know what kinds of things they are going through. I try to remember: everybody’s trying their absolute best in the moment with the cards that they’ve been dealt. And with that, I hope people try to help each other out. I am so thankful for everybody in this journey; donations, dropping off meals, just a text means a lot. Just reaching out to be a sounding board goes a really long way. Those may seem like small things, but they mean the world. And I am so grateful and thankful for the people that care for Claire and for our family.”
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CAN YOU HELP CLAIRE FIND A KIDNEY?
Claire’s best chance at a successful transplant is receiving a kidney from a living donor. You may qualify if you are between the ages of 19 and 65 and in relatively good health. The Nebraska Medical Center has a simple screening survey, which takes less than 5 minutes: CLICK HERE.
When taking the survey, please list the intended recipient as Claire J Stannard, DOB 4/29/2024.
The Stannard family also hopes you might consider supporting one of the organizations that have been so important to them in their journey.
Children’s Hospital & Medical Center is the Stannards’ home away from home; from caring for Claire in the NICU for the first four months of her life, through surgeries and check-ups, and now in preparation for an organ transplant. RIGHT NOW you can benefit Children’s as part of their 23rd annual Radiothon with The Kat 103.7. Become a Miracle Maker today by calling (402) 955-7100, texting CARE to 34984 or giving online at TheKat.com.
CRCC IS the Stannard girls’ home away from home; the Connected Roots Care Center is a comprehensive child care and therapy facility providing childcare for kiddos with medical needs, and for their siblings so family’s can stay together. If you’ve ever struggled to find childcare you trust, imagine doing so with a medically fragile child! For 35 years, CRCC has provided individualized care and therapeutic support in a community welcoming to all children. Donations help provide services to as many families as possible, and to keep CRCC flourishing. Learn more and donate here.
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