What Have I Been Up To? + Cord Blood Banking Options

Clearly it has been over a year since I blogged. Here is a quick crash course of what I have been up to since my last update:

  • We moved to Daegu, South Korea in August.
  • We are moving to Osan AFB, South Korea in June.
  • My twins just turned two in April.
  • I turned 29 just six days after their birthday.
  • It’s been almost exactly 4 years since I was diagnosed with Hodgkin’s (May 11, 2012).
  • I am still in remission.
  • I only go in for cancer check-ups every six months now, and nowadays only have to do blood work and CT scans instead of PT scans (which is good because I receive less radiation exposure).
  • In one year I will be considered “cured.”
  • I just had blood work done yesterday and all was well.
  • I wrote a 67-page thesis.
  • I turned it in on May 1.
  • I now have a master’s degree!!! Woohoo!!! (Or will as soon as final grades are submitted)
  • I’ve lost somewhere in the neighborhood of 20 lbs since December. I am still not at my pre-cancer weight, but am hoping to address that more aggressively now that I am done with grad school.
  • We have done A LOT of traveling. Before we left the states we took several road trips to visit family and have also taken short vacations to Seoul and Tokyo since we moved to South Korea. My two-year-olds have traveled through or visited a grand total of 21 states, the District of Columbia and three countries since birth, and have also lived in three different houses/apartments (soon to be four!)
  • This will be our third move in 18 months.
  • We have made countless friends and have had to say many “see you laters.”

I am currently experiencing some kind of post-thesis energy surge where I feel like I have so much more time to do cool things like take my kids to story time, read for pleasure, watch TV, go for walks, and blog (apparently.) I am hoping to do these things more often now that I am done with grad school. I had a lot of moments where I thought, “oh, I should totally blog about THIS!” and then realized I had a deadline for grad school approaching and thought, “Nevermind….maybe later.”

So, for the time being at least, later is now. There is one blog topic in particular that has bounced around my mind since I got pregnant almost three years ago: cord blood donation and banking.

Let’s start with cord blood donation first. Be the Match is probably the best resource for this information. To summarize, umbilical cord blood is rich with blood-forming cells that can give blood cancer patients hope for a cure. Parents can donate their baby’s cord blood to a public cord blood bank and it will be listed on the Be the Match Registry, where it’s available for anyone in need of a transplant. According to the website, donating cord blood is completely free and safe for mothers and babies..

Thousands of critically ill patients with blood diseases like leukemia and lymphoma are in urgent need of a life-saving transplant. Umbilical cord blood, which is typically thrown away, contains blood-forming cells that can give blood cancer patients hope for a cure. Donating a baby’s cord blood to a public cord blood bank can help patients get the transplants they need.

I researched this process and as soon as I filled out the questionnaire on the “Learn if you can donate cord blood?” page, I realized I wouldn’t be able to donate my babies’ cord blood for two reasons: 1) Cord blood is not accepted from multiple birth pregnancies (twins or more), and 2) I am a cancer survivor. I feel like the second reason is totally legit and not surprising. I feel like the first reason is kind of weird. Be the Match cites the following for the reason for the ban: “[…] public cord blood banks can only accept donations when one baby is expected. With twins, each umbilical cord has different tissue types and it’s possible the two cord blood units could be mixed up during collection.”

I find it hard to believe in a world where we can train people to perform organ transplants on the reg, we can’t train them to properly collect cord blood from multiple births. I also find it hard to accept that in a world that has extensive testing for said organ donations, we can’t also properly test cord blood. I would be more inclined to accept this as a legitimate reason (sort of) if the private industry didn’t offer storage of twin cord blood for personal use, but (spoiler alert) they do. Which brings us to the topic of cord blood banking.

Essentially cord blood banking is the same procedure as cord blood donation, except that the cord blood then goes into storage for a fee in case the child or a family member of the child one day needs it. WebMD has a pretty comprehensive list of the pros and cons of cord blood banking. The pros being that it could possibly save someone’s life one day. The cons being that the odds of someone ever using it are pretty slim to justify the (very expensive) collection and storage fees. The article states that some medical professional don’t encourage families to bank cord blood unless someone in the family has or has been diagnosed with certain blood disorders, including leukemia and lymphoma.

As a blood cancer survivor, I was deeply concerned that my kids could one day have blood cancer or another disorder, and wanted them to have every possible option available to them if that time ever came. However, the cost of cord blood was definitely a barrier for us, especially after costly medical expenses. I was extremely disappointed that we couldn’t donate our babies’ cord blood or even pay to store it for possible future use. It seemed like such a waste.

Enter CBR’s Newborn Possibilities program. CBR is one of the private companies that offer cord blood collection and storage to families for private use (usually for a fee.) However, they also run the Newborn Possibilities program and offer qualifying families free collection and storage of cord blood for up to five years. I found this program through extensive Google research, and suspected we qualified.

To qualify, the newborn should have a full-sibling or a biological parent (check) who has been diagnosed with a disease and disorder currently treatable with stem cells (check). The newborn may also qualify if he/she was identified as having a health condition during pregnancy or at birth that may benefit from experimental stem cell use. I called the number listed on their website (1-888-932-6568) and was quickly put in touch with one of their clinical specialists. After a brief conversation, the clinical specialist agreed we most likely qualified, and soon emailed me an application for the program and other forms.

After filling out some paperwork regarding health history, getting a note from my oncologist confirming my diagnosis, and having some blood tests run, I submitted the application to the company and we soon found out we were approved for the Newborn Possibilities program. The only possible cost associated with this procedure would be whatever fee the hospital would charge for actually cutting the umbilical cord and placing it in the storage containers (usually a marginal cost compared to the regular cost of collection and five years of storage fees.) Fortunately, our insurance covered this fee as well.

Leading up to my due date, we received two collection kits (one for each baby) with “parent instructions.” All of this was pretty simple and can be broken down into the following:

  • Activate your online account
  • Confirm the receipt of the collection kit.
  • Complete the Family Banking Enrollment forms.
  • Unpack the kit and make sure all the items are in the kit
  • Inform your doctor you are going to bank your newborn’s cord blood.
  • Put the collection kits in your hospital bag leading up to labor/delivery
  • Once arriving at the hospital to give birth, inform your admitting nurse that you have arranged for your newborn’s cord blood to be collected and you’ll need an additional maternal blood draw to be returned with your cord blood and/or cord tissue.
  • Keep the kit accessible and ensure it is available for easy access by your health care providers (I put my husband in charge of this and the remaining steps.)
  • After collection, check your kit to ensure samples have been return and that the data collection sheet as been filled out completely.
  • Fold box for shipping and follow all shipping instructions.
  • Call 1-888-588-1292 to arrange CBR’s One-Step Shipping (available 24/7). Someone should arrive to pick up the kit(s) very quickly. The kits ideally should arrive at the CBR processing facilities within 32 hours after giving birth.

I highly encourage anyone who is expecting a baby to research cord blood donation and banking options, and figure out what is best for your family. I also encourage you to share this information with anyone you may know who is expecting a baby and has a family history of blood cancer or other blood disorders that are treatable with stem cells. The Newborn Possibilities program may one day help save their life or someone else’s.

 

 

 

 

 

 

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4 thoughts on “What Have I Been Up To? + Cord Blood Banking Options

  1. Love your blog, Laura. I didn’t know any of that about donating cord blood. I wish I had known 5 years ago! Thanks for sharing your story and your passion! – Lindsay

    • Thanks so much, Lindsay! Please talk about these programs with anyone you know who may be having children soon or are in the position to educate expectant moms! By raising awareness we can help change lives!

  2. When Tiffani was born almost 23 years ago, cord blood collection was in its infancy. I checked into it, but it was insanely cost prohibitive and I never found any donation options. I too wanted to save my children’s cord blood for all the possibilities it provided them. I knew cancer ran on one side of the family, but there were further implications for the possible treatment, with medical advancements, of diabetes as well.

    • Thanks for sharing, Jean! I imagine a lot of these programs are pretty new and all we can do is share the info with others since we can no longer donate! Raising awareness is an important part of the equation.

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