Hands down, there’s nothing more valuable and precious than health.
I knew that before, of course, but this scary time of society battling Coronavirus has really made that lifelong fact absolutely clear. There’s truly nothing more important than health. Without it, what do we have? I look back on just weeks before all this Coronavirus craziness started, and I now see my memories dancing on a plush cloud. We had it so easy, didn’t we? Simple things, like going to the grocery store, being able to hug friends and family, and enjoying a night out at dinner were just average, every day occurrences. That even comes into play when I think about how we prepared for Beau’s arrival — decisions like “Should we collect his cord blood and cord blood tissue?” or “Is cord blood banking worth it?” seem different now. Before, they were options for us. Now, they’re absolute musts.
Today, I’m excited to dive into our family’s experience and ultimate answer to the important question of “Is cord blood banking worth it?” For us, it’s a question and topic that was relevant far before Coronavirus picked up, but especially now that we’re experiencing what it’s like to be in the thick of a worldwide pandemic, I believe it’s important to consider for any family.
Is Cord Blood Banking Worth It? Our Family’s Experience & Answer
Before I share our experience and answer to that question, let’s level set on all the facts, shall we?
First up: The facts
What is cord blood & cord tissue? How do they play into stem cell research?
Okay, so, I have to start by saying if you’re a bit lost on this whole subject, you’re not alone. It’s all kind of confusing and we had to do a lot of research to fully understand the context and benefits of stem cells. Hopefully this overview is helpful for you — I’ll try to keep it short, sweet, and to the point!
Cord blood and cord tissue are both derived from a baby’s umbilical cord. They are rich in stem cells. Cord blood stem cells are currently used to treat 80+ conditions, including cancers, blood disorders, immune disorders, and metabolic disorders. Both cord blood and cord tissue are showing promise in regenerative medicine. In other words, stem cells are being researched for their ability to act like our body’s own personal repair kit and may be able to help our bodies heal in new ways.
If you want to check out more research or have further questions, swing by the Newborn Stem Cells 101 section of the CBR website, and also check out this overview of what all can be treated with cord blood stem cells. These resources do a great job providing easy to understand answers!
How do you collect cord blood and cord tissue?
This is the part where it’s important – vital – to make the decision before your baby is born. Newborn stem cells can only be collected at birth, since they’re found in the umbilical cord of the baby.
The actual collection of cord blood and cord tissue is completely painless and easy for the doctors or midwives to do. Basically, after the baby is born, they remove blood and take a section of the umbilical cord itself. We found the process to be very seamless and simple.
Another reason why you need to make the decision before your baby is born is so that you can go to the hospital with your kit in hand. This is very important because, while it’s a fairly easy process for doctors and midwives to do when the baby is born, not all hospitals have the kits readily available at delivery. Arranging it is up to you! So you need to reach out to your desired bank – whether public or private – and organize it all before hand so you’re prepared. Most banks recommend to set it up by 32 weeks, if possible.
Who can use the stem cells?
This is where it gets even better! The baby is a perfect match for their stem cells, of course. But stem cells are also able to be used by siblings, parents, and in some cases even extended family members such as grandparents. It all depends on what you’re aiming to treat and whether the stem cells are a match, of course. So each situation needs to be looked at contextually.
Your Questions, Their Answers: Q&A With The Cord Blood Research Team
Recently, I asked what questions my Instagram audience had in regards to cord blood/cord tissue, stem cells, the process of collection, etc. Below are the questions that were submitted, and the answers provided by the CBR team. I hope this first-hand access to their team is helpful for you!
What can currently be treated/cured with stem cells?
Cord blood stem cells are being used to treat over 80 diseases, including blood disorders, cancers, immune disorders, and metabolic disorders. This link on CBR’s website goes into the specifics of what is being treated now.
If I was diagnosed with an illness could I use my son’s cord blood for treatment?
It’s possible as parents are always a partial match to their child’s cord blood stem cells, but ultimately, it’s up to the treating physician and they will be looking at multiple factors. You can also call to talk to one of CBR’s certified genetic counselors about your family’s specific medical history and how it pertains to newborn stem cells. Just call them at 888.240.1996.
Is there just one cost associated with it or is there a monthly storage fee?
There is an initial fee that is paid when the sample is stored in the CBR lab. Then there is an annual storage fee. Visit the pricing page at this link. Just for Isn’t That Charming readers, click here & use my code PINN to get $1,200 off cord blood and tissue collection and storage ($1,630 instead of $2,830) or $500 off of cord blood only ($1,180 instead of $1,680).
What are the total start up costs and then yearly costs associated?
There’s two parts to the price – the initial fees and the annual storage. The initial fees aren’t due until after birth and you can pay all at once or there are payment plans that go as low as $33 per month with my code PINN. The annual storage after that is only $180 per sample, per year.
Use my code PINN to get $1,200 off cord blood and tissue collection and storage ($1,630 instead of $2,830) or $500 off of cord blood only ($1,180 instead of $1,680).
How long is it recommended to keep stem cells for?
Based on all the research to date, it looks like stem cells can be stored indefinitely, as long as they are stored at proper cryogenic temperatures. It’s actually one of the reasons that CBR keeps their lab and storage facility in Tucson, Arizona because its historically free of natural disasters – helping keep your samples safe and sound!
What are the main differences between private vs. public banks?
Private, also known as Family banks, mean that you are storing for your immediate family’s personal use. If you choose a public bank, there is no way to guarantee you could use your own stem cells should you need them in the future. Donation is not available at all hospitals, so you’d want to check to see if its an option in your area.
I’ve heard siblings can use it, is that true?
Yes, full siblings have the highest potential to be a match. Two siblings have a 75% of being either a partial or complete match to one another.
Transplant medicine requires that the stem cell source is a closely matched individual like a sibling, and regenerative medicine investigations typically involve use of a person’s own cells or those of a closely matched relative, like a sibling.
Is it worth the cost? Why?
Newborn stem cells are a priceless resource for you and your family’s future health. Cord blood has been used for decades to treat over 80 serious conditions affecting the blood and immune system, and more research is being done every day exploring new potential uses. CBR has certified genetic counselors available who can talk to you about current and potential treatments. Give them a call at 888.240.1996.
What are the differences in treatment/things that can be cured depending on the baby, siblings, parents, and extended family members?
Cord blood use depends on both the treatment indication and whether the child is an immune compatible match to the family member. Siblings who share both biological parents have a 75% chance of being either a perfect or partial match. Parents will always be a partial match to their biological children since they get half their DNA from you. Grandparents and aunt/ uncles, nieces/nephews have a 50% chance of being a partial match. In most cases, doctors look for at least a half or partial match, but there are some cases where a full match is preferred. CBR recommends you call and ask to speak to a CBR genetic counselor for more information at 888.240.1996.
When we looked into it years and years ago, the way stem cells were potentially dispersed really bothered me. Basically they assessed the stencils and stored them, but if another child needed your child’s stem cells then there was no permission system, they just used them. But what if your child or a sibling needed them later? Basically they told me I was SOL. It was a different company and it was years ago. Has that changed? Are there new safeguards?
It sounds like you are describing a public bank. When you donate your child’s cord blood to a public bank there is no guarantee that the cord blood unit will be available to your family should you need it in the future. Choosing to preserve your newborn stem cells with CBR or another family bank ensures that they are available exclusively for your potential future use. CBR will not release your child’s stem cells without your express permission. And they cannot be donated to someone outside the family.
With Coronavirus a hot topic right now, the CBR team has added some FAQs to their site.
In short, Coronavirus is a virus and so stem cells don’t directly help to fight it. However, cord tissue stem cells have been in research for many years for lung disease due to their anti-inflammatory properties. There’s a lot of optimism around early research using cord tissue stem cells to treat the respiratory complications of the Coronavirus.
Is Cord Blood Banking Worth It? Our Family’s Experience
Why our family decided to collect Beau’s stem cells
When I was pregnant with Grace and Josephine, collecting cord blood and cord tissue was very loosely talked about. It was highlighted at a baby conference I went to, and was mentioned by our doctor’s office in Chicago. We looked into the option, but ultimately decided it was too expensive for us at that time, and didn’t really think twice about it. Looking back, I see that we didn’t fully understand the why and so its relevance to us was not prioritized.
Flash forward to being pregnant with Beau, and we are now living in Michigan and of course at a new doctor’s office. Doug and I decided to take a Labor and Delivery course. And the instructor had a whole section of the class dedicated to options for collecting cord blood and cord tissue, the benefits, and why families choose to do it.
I’m not sure if it’s because Beau may be our last baby, but all of a sudden our eyes were better opened and our interest was spiked. You can treat over 80 conditions today, including cancers, blood disorders, and immune disorders?! Siblings, parents, and even grandparents have the potential to use cord blood if it’s a match?! Stem cell research and advancements are truly incredible, and after doing lots of research, we wanted in.
Our doctor’s office recommended CBR as an option, which is no surprise considering CBR is the #1 OB recommended option.
We decided to go with CBR not just because it was recommended, but because it’s a private family cord bank. And we wanted to ensure that our baby’s cord blood would always be available to our family. (If you choose a public one, that’s not guaranteed.) I reached out to them to partner on this post and to collect and bank our baby’s cord blood, and cord tissue.
Our “why” can be summed up with this: We’re looking at the collection of Beau’s stem cells as a guardian angel of sorts. Hopefully we’ll never need to use them. But, should a situation arise where they can be helpful — even treat things like cancers and many disorders — they’re there for us. We know they’re safely banked, and that we’re doing everything we can to protect our family’s future.
Start to finish: A review of the process and our experience
At first it all felt a little overwhelming to me, but how it all played out was actually very easy.
First, we had a call with a CBR team member, who explained the entire process to us and answered all our questions. One note is that while I did partner with the CBR team on this post, the consultation with their team members is available to everyone and completely free.
The next step was for their team to send us the cord blood and cord tissue kit. I had my call with their team at 37 weeks pregnant. And the kit arrived the day after that consultation call. Super speedy! We registered our specific kit on the CBR website, and we were all set to go.
From there, it was simple. We just brought our kit with us to delivery.
(Here’s the post on what was in my hospital bag for labor! I noted the kit in this post as well.) As we entered into the delivery room, we gave the kit to our nurse, and she organized everything from there. All the nurses and doctors knew exactly what they were doing – almost like it wasn’t a big deal at all. (Interesting note: We asked the nurse of collecting stem cells was common and she said over the past few years it’s becoming more and more so, and that she highly recommends it!)
I was in the thick of delivery and sobbing happy tears when Beau was born. So I didn’t see or notice the actual collection. Doug, however, was curious and made sure to check out how they did everything. Here’s his recollection. Once Beau was born, they delayed cord clamping for about :45 to a minute. (There are benefits to doing this — here’s some information on delayed cord clamping!) They then clamped both sides of the cord, took a syringe, and removed the necessary cord blood. Then, they collected tissue, which was done by the doctor. The entire process took mere minutes, and Doug said everyone knew exactly what they were doing. It was really seamless and easy.
After all the collection was done, they packaged up the kit and then handed it back to us. Doug then called the carrier number provided to us. And the collector literally came to out room to collect the kit a few hours later. Once our kit arrived at the CBR bank, we got a confirmation email. And now it’s there for us when and if we need it!
The Ultimate Conclusion: Would I recommend it?
Hands down, yes. Yes, a million times over! Here’s why.
The process and collection was very seamless and easy. Using a private family bank means our baby’s stem cells are safe and there for only us to leverage should we need them. Especially during this crazy time of a pandemic, I see the importance of maintaining health and being proactive wherever possible. Unfortunately in life, health is not guaranteed. Tragic things like cancers and disorders happen. While it’s impossible to prevent these things from happening, I do have peace of mind knowing that we have the option of Beau’s cord blood and cord tissue for not only him, but Grace and Josephine as well. Even for Doug, myself, or our parents in some cases!
Like I said before, we look at this as a guardian angel of sorts — hopefully none of us will never need it. But, if we do…it’s there.
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If you’re interested in exploring stem cell collection for your family, click here & use my code PINN to get $1,200 off cord blood and tissue collection and storage ($1,630 instead of $2,830) or $500 off of cord blood only ($1,180 instead of $1,680). I want to extend a huge thanks to the CBR team for providing this generous discount for my readers.
After learning more about it and reading our family’s experience, do you feel that cord blood banking is worth it? Why or why not? Let’s chat in the comments below!
This post was done in partnership with the CBR team. Transparently, I did not receive any payment for this post, however, our family did receive complementary cord blood and cord tissue collection and two years of storage. As always, all opinions are my own!
7 comments
Oh so interesting and something that intrigued me when we had Charlotte and Callum but again it was really only just starting. I love how you describe it S your family’s Guardian Angel, that’s so true!
Very interesting and something important to consider! If you’re okay sharing, did you decide to go with the annual storage, 18 year, or lifetime?
Absolutely okay with sharing! We are doing annual storage. Haven’t yet decided exactly how long we’ll keep the stem cells for — I think we’ll do it for a minimum of 18 years and then gauge from there!
Clearly you haven’t received any bills from this company where they charge a heck of a lot more for storage than you originally agreed to. They get you by the b@__s because they hold your stem cells hostage and then can charge whatever they want for annual storage. What choice do I have but to just continue to pay whatever they say I must in order to have this insurance and protection. Glad they’re looking out for you
Hi John — This was a post done in partnership with CBR, however, we are responsible for our own annual storage after this partnership has ended. We agreed to this, fully knowing the cost because we believe in the service and what it provides! However, I certainly understand that it’s a big decision and commitment. It’s definitely one that we all must make in context and do what works best for ourselves and our families. Thanks for swinging by and I hope the information in this post was helpful for you!
I found it is easy to find people sharing experience before an incident strikes but not after so I am going to share mine. Yes, the process of getting cord blood stored is painless. We have 2 kids and we had the cord blood stored with CBR for both of them. Do I recommend parents to do it? My answer is no. Not because I am against CBR but because of the whole stem cell storage hype. It sounds wonderful that it gives you a backup plan but when things happened but there are a lot of factors to consider that you wish someone had told you before.
My son was diagnosed with AML type Leukemia at aged 14 and ended up needing to do bone marrow transplant. At first we were glad that we had his stem cell stored. However, the reality is that there is a disconnect between the people promoting cord blood storage and the medical professional who are actually treating the patients. Doctors on the field are actually very conservative. They have to plan every single steps and they don’t take chances. In my son’s case, there is a better survival chance to use someone’s else bone marrow because (1) they don’t want to reintroduce the bad stem cell back to his body (for very obvious reason because he had blood disorder disease) and (2) the recovering process of using stem cell is much slower than using someone else’s. There is a high chance that stem cell does not generate good white blood cells fast enough to counterattack the bad white blood cells and put his life at risk. When doctor told us to call CBR to make sure they destroy my son’s stem cell so that it won’t be used by someone else. CBR support actually tried to convince me to talk my son’s docker into using his own stem cell. I mean, when this unfortunate event happened, things happened really fast and your family was in chaos. All you could do was to listen and follow to your doctor’s recommendation. I am no medical training at all and how could I talk my doctor into this? It is not like something you can setup a conference call between CBR and your doctor to find the best solution to the patients. CBR sales and tech support have serious disconnect of the real life use case.
We paid for the entire 18 years of storage upfront. We called CBR to tell them we want to destroy my son’s stem cell, they said they can do that but they are not able to refund me the storage period that is not used because they have no such policy in place to refund customers who have paid in full. After you saw my story and still decide to go for it, then I would recommend you to go by monthly.
In summary, based on my personal experience, I was misled by the hype that it would be useful when this kind of event strikes but the reality is that it is not the case. Stem cell could be useful but I would wait to see. I would bet my money on the donation banks instead.
I hope my story can reach more people so that you can make more educated decision.
Thank you so much for sharing your story. I always value different perspectives, and I appreciate you taking the time to help others see and understand yours! This will no doubt be helpful context for those who are looking for constructive feedback and notes as they consider this option.