A mother’s story: Cord blood brought us hope

Posted May 5th, 2011 by Be The Match and filed in News, Patient Stories
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Jenny's daughter's Grace and Bea are alive today thanks to donated umbilical cord blood

Photo credit: sawyersportraitsandweddingphotography.com

Jenny tells her story

I was pregnant with Grace when we found out that Bea had a serious immune disorder. Bea was about 15 months old at the time. She hadn’t been sick that much as a baby – some of her immune system was working, but not all. But then she got thrush and lost two pounds. Our pediatrician wanted to wait a week to see if she’d gain weight, but we were too worried to wait. We took her to the emergency room.

That’s when we found out she had a kidney infection that had gone unnoticed because she didn’t produce a fever. The doctors thought she might have had the infection for a long time, and they told us that the issue was bigger than a kidney infection. They sent us to an immunologist. There was a lot of bloodwork done, a lot of questions asked.

Two girls, one diagnosis

Finally they told us she had severe combined immunodeficiency and that she needed to have an umbilical cord blood transplant as soon as possible. They also told us there was a 25% chance that the baby I was carrying could have the same disorder. Two days after Grace was born, we learned that she did.

By this time Bea was being treated by Dr. Joanne Kurtzberg at Duke University Medical Center. We made plans for both girls to receive cord blood transplants.

Donated cord blood brings new life

It didn’t take long to find matching cord blood units for both girls. They told us Grace had a perfect match and Bea’s was one number away from a perfect match. Bea received her transplant on June 3, 2010, and Grace received hers the next day. Bea was two years old, and Grace was just two months old. They were in adjoining rooms at the hospital, and my husband took care of Bea while I took care of Grace.

The doctors told us transplant day would be pretty uneventful, like a blood transfusion. It’s just a bag of blood that goes into their system and that’s it. But it was a special time for me. I felt like that cord blood was bringing us hope. It brought my girls new life. It was a happy day, not scary. We were giving our girls a chance for a better life.

My message to expectant mothers

That’s what I want other mothers expecting babies to know – you’re giving someone hope. If you have the chance to donate your baby’s umbilical cord blood to a public cord blood bank, please consider it. You can give someone else another chance at life – be a mother for another. It’s such an easy thing to do, and it means so much.

The chance to do normal things

Our family relocated from Los Angeles to Durham, N.C., to be near the girls’ doctor and transplant center. When we moved here, our focus was all on Bea and Grace’s recovery.  Today, the girls are doing great. We’ve been able to think more of our family’s future, building a life here. I plan to begin studying to be a nurse practitioner and my husband is starting a photography business here.

Grace had her first fever a few weeks ago and she fought it off with her own immune system. The girls have about 25% to go for all their blood counts to be where they should be, but when they had bloodwork done at 9 months post transplant, their immune systems were at normal levels. That is a really big deal.

That means we can start doing normal things. Dr. Kurtzberg said they can go to preschool in the fall! Maybe they can even go in our neighborhood pool this summer. Go to the grocery store without a mask, go to a restaurant, a water park. All those little things that we’re going to be able to do are so exciting. There’s a lot I’m looking forward to.

10 Responses to “A mother’s story: Cord blood brought us hope”

  1. Penny DeBell says:

    What a wonderful story of Grace and Bea! My daughter Caroline received a cord blood transplant at Duke in September of 1998 for leukemia. She is now 18, will be going to her senior prom this weekend, and will graduate from high school in about a month! We feel truly blessed!

  2. ed secord says:

    Dr. K rocks ..she pioneered this transplant when no one else dared ..while the outcome is not always the best as with any transplant ..this is a chance that didn’t exist 25 years ago.it allows for a partial match vs. a complete match .Anyone knowing someone getting ready to give birth should consider the carolina blood bank kit for their doctor to save their cord blood. .it is only thrown away if you don’t have it saved

  3. Clark West says:

    What a wonderful thing, new life giving life and hope to others.

  4. Lynne says:

    When I was pregnant with my second child back in 2003, I heard about the possibility of donating cord blood. I searched all over and asked the hospital where I was pre-registered, but couldn’t find any way to donate from the city I was in. I would have been thrilled to participate, but couldn’t find any way to do so.

  5. Matt & Lisa says:

    It’s so wonderful to hear about another success story for siblings with a primary immune deficiency. Our boys also had BMTs at Duke for a XHIM (X-linked Hyper IgM). They are 6 years post transplant and are totally cured! 🙂 We wish your daughters continued health.

  6. Anne says:

    I donated my first daughter’s cord blood in 1997, but could not find a means to do so when my second daughter was born in 1999, despite using the same hospital and obstetrician.

  7. online store niche says:

    Is it alright to place part of this on my personal webpage if I publish a reference to this web site?

  8. Be The Match says:

    Hi Online Store Niche,
    Thank you for your comment! You can provide a link to the story, but if you want to publish part of the story on the site then we ask that you complete a trademark request form. You can find more information here: http://marrow.org/Contact/Permissions/Trademark___Copyright_Permissions.aspx

  9. Online Business Ideas says:

    This story really touches my heart and I would like to share it with my friends. Very inspiring story about motherhood. Thank you very much for sharing this one.

  10. Sarah Baby Crib says:

    This is really great story. Story of love and hope !

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