An Unexpected Gift Brings a Family Hope and Strength
A ViaCord Mom Shares Her Story | ViaCord Blog

Our FamilyIn the midst of learning about their daughter’s disease, Megan found out she was expecting again. Although it was a suprise, she and her husband, Nick, knew this pregnancy was meant to be – a precious gift with a big purpose.  Her newborn’s cord blood stem cells could potentially be used in a treatment someday for their daughter. Megan has been kind enough to share her family’s story with us, and we’re thankful to be a part of it.
This is their story told by Megan……

 

“When you have a baby you envision hair bows, tiny suit ties, lots of gummy smiles – all of the wonderful moments to come. My husband, Nick, and I had that with our little ones Hannon (15 months) and Declan (4 months). And like most young parents we also had so much to learn and worry about. It turned out to be more than we ever expected.

Hannon had struggled with staph infections since just 3 weeks of age. We had no idea how concerned to be. However, infection after infection accompanied by reoccurring fevers raised a red flag that we were dealing with more than just a rash. Blood tests showed that Hannon had a low neutrophil count. Neutrophils are a type of white blood cell that play an essential role in the immune system’s response to infectious organisms. They defend against bacterial or fungal infections. For five days we sat in isolation on the bone marrow transplant floor of Cincinnati Children’s Hospital and watched her count – it was nowhere near where a toddler’s should be. We were scared and had no idea what was going on. We couldn’t look other parents on the floor in the eye. We refused to believe we were “one of the crowd.”

This Doesn’t Happen To People Like Us

Finally, we got some answers in the form of a diagnosis – Autoimmune Neutropenia (AIN); a bone marrow deficiency. BONE MARROW? Nothing could’ve been wrong with our little girl’s bone marrow. All we could think was, ‘This doesn’t happen to people like us. We go to church, we work hard, we love our children.’  No matter what type of severity a disease may or may not hold, no parent wants to hear their child has a disease. Although the tests leading to the diagnosis are new to medicine and are not 100% accurate, we believed we had something to work with. Now we were parents on a mission.

The outcome for children with AIN is a positive and hopeful one. We learned that there are multiple types of neutropenia and if Hannon truly does have AIN, there’s a chance she may outgrow it. If the diagnoses changes or develops into something more severe, however, kids with AIN may need treatment via a bone marrow transplant.

When we returned home from the hospital our way of daily living changed, to say the least. Nick and I sanitized everything – we’d boil toys and wipe down all areas (my kids were not going to encounter more germs than necessary). I stopped teaching. Students carried too many of the germs that Hannon couldn’t fight.  And the thought of me bringing them home to her was too much to bear. We were told from time to time not to take her out of our home, to avoid busy stores; don’t take her to the grocery store.

The Best Gifts In Life Come In Small Packages

We monitored Hannon’s blood twice a week. With her neutrophil counts at the levels they were she just couldn’t handle anything. We closed our home to friends and only allowed close family in. Nothing is worth the risk of your child’s health. I would sit and hold Hannon and cry. She didn’t know why, of course, but she knew I was sad. I was scared to death. And so happy at the same time to see Declan reaching milestones and maintaining such good health. Then the crying just hit me one day. I was stronger than this. Why was I crying nonstop? Turns out, I was pregnant!

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Now most parents in my situation would be distraught at the thought of having to handle one more thing, especially a newborn, but Nick and I knew there was a reason for this pregnancy – it was something bigger than us. In March of 2013, Hannon’s bone marrow biopsy contained just enough abnormal cells to be concerned with. We started discussing options with our doctors knowing we’d do anything. Dr. Chandra and Dr. Kumar, of the Cincinnati Cancer and Blood Institute, told us about a unique opportunity we had because of my pregnancy.  When the baby was born we could save the umbilical cord blood, which contained stem cells that could potentially be used for Hannon one day (should she ever need a stem cell transplant).  Not many families are expecting another baby while learning about the depth of their child’s disease. We knew this baby was meant to be.

The cost of banking cord blood was something we were aware of, but never batted an eye at – there was no price on hope for Hannon. Our doctors then told us we may qualify for ViaCord’s Sibling Connection Program.  This program provides ViaCord’s cord blood and cord tissue stem collection; processing and five years of storage at no cost to expecting parents who have a child with a disease where cord blood stem cells may be used in treatment. For the first time, we felt like we were grasping a hold of things that seemed to be spinning out of control around us. We contacted ViaCord and were enrolled in The Sibling Connection Program. It was better than being accepted to college!

Celebrating Life, One Day At A Time

In the following months things for Hannon began to get better – her infections lessened, precautions could be lifted here and there. We were really celebrating our family of four and what was to come.

When we received our cord blood collection kit (aka “THE box” that would be used to collect potentially life-saving stem cells), ViaCord called to walk us through the process and let us know what to expect on the day of delivery. Everyone we spoke to was so invested in helping us; they calmed our fears and answered all of our questions. As my due date neared we let my OB, Dr. Denise Sutler, know we’d be banking the baby’s cord blood stem cells for potential use by Hannon. Dr. Sutler is a huge advocate for cord blood banking and had experience doing cord blood collections for research purposes. She was fully on board and pumped to be a part of something so special for our family.

On the morning of June 28 2013, we found ourselves driving to the hospital for the day we’d all been waiting for. When we got there, Nick carried my bags and I carried the collection kit. That kit did not leave our sight for one minute. Our nurse even brought in an extra table to set the kit on right across from us. Every nurse that was assigned to my care was told of the circumstances and the importance the kit held for our family and our little girl.

It wasn’t long before Nick announced, “WE HAVE ANOTHER BOY! IT’S A BOY!” Finn William had arrived in quick fashion – our little boy was on a mission. We were ecstatic for another little boy. Finn was placed on my chest and I just hugged and hugged him. My first words to him were, “I love you my special little boy”…followed by… “Are you ready for the chaos of our home?!’”  A nurse came over, wrapped Finn up and handed him to Nick. Nick stared at Finn and I stared at Dr. Sutler. A nurse stood next to her with the materials to perform the cord blood collection.

Whew! This Was Real.

dr.sutlerI prayed. All I asked was that this blood helps someone, someway. Even with Dr. Sutler’s experience collecting cord blood for research, she admitted she was nervous – this time was different. She said she’d never felt so invested and had never performed a collection knowing it was intended for sibling use.  This showed how real she is (one of the many reasons we love her!) and how much she truly cared about our family. Dr. Sutler filled the bag with as much blood as possible before ensuring everything was sealed and packaged properly. The collection was complete. Next, Nick called ViaCord to let them know our kit was ready for pick up.  After ViaCord carefully reviewed the kit contents and labeling with Nick, the box was sealed, placed on my lap and Finn was cradled in my arms on top of the box.  We were off to the recovery room.

Finn was passed around to his grandparents; everyone was all smiles. Of course Nick and I were all smiles at the sight of our little boy, but we also smiled at the sight of the sticker on that special cord blood collection box, “For potential use in transplant for this baby’s sibling.” Within what seemed like minutes, a courier arrived to pick up our box. He showed us his I.D and told us he would have our cord blood collection kit to its location as fast as possible. We felt like we were handing over gold to a guard. The smile he gave made us feel like he knew something special was happening. I received a text message alerting us that our kit had arrived at ViaCord’s Processing Laboratory.  Whew! This was real.

Life As Five Begins

We left the hospital and life as a family of five began. Hannon’s health continued to improve, she was completely in love with her new baby brother, and Declan was keeping us on our toes (literally) as he learned to walk. We were in a good place.

3kidsOne day that summer we received a call from Dr. Chandra at the Cancer and Blood Institute, and our nurse care manager, Denise. They had news to share – Finn was not a match for Hannon. We didn’t know how to take it. Naturally questions flooded our minds, “Did Hannon need a bone marrow transplant?”.  She had been so well, but we couldn’t know for sure. “What did the future hold for her?” Who are we to guess?  At Dr. Chandra’s suggestion, we would not go into details about “what ifs.” Finn was not a match, but there were other potential matches out there that could work for her, should the need arise.

Thankfully in July Hannon’s bone marrow test showed that the abnormal cells were no longer a concern.  We were so grateful.  Hannon still has AIN, accompanied by some health concerns here and there, but what child doesn’t. Children are a gift. In times where Hannon doesn’t feel like playing or running around, Declan brings laughter– he is such an entertainer. And even though Finn is not a match for Hannon, we know he was given to us for a purpose. When I was pregnant there were days when Nick and I were terrified of how Hannon was feeling, and then a little flutter in my stomach reassured me that there was something worth smiling for. Finn brought strength to his mother and father in some really sad times.

It Takes A Village

Finn’s cord blood and cord tissue stem cells will be stored for at ViaCord for five years, thanks to their Sibling Connection Program. Hopefully we’ll never need to use them. Beyond allowing us to have these gifts from Finn’s birth, the Sibling Connection Program has also given Nick and me the ability to share our experience with others and encourage families to bank their newborn’s stem cells for so many reasons.

We will be forever grateful to ViaCord for the opportunity to bank and to bring to the surface how it really takes a village to raise a family. What a fantastic gift ViaCord has given our family. If nothing else, we have a renewed sense of humanity. Thank you to everyone we encountered during this experience. You have taught a young set of parents to see the good in the world, even on the darkest days.”

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