Cord Blood Banking – A Difficult Decision
Cord Blood Banking: A Difficult Decision
An honest look at cord blood banking for LP families — what the research says, what it doesn’t, and how to think through the decision.
Among the many difficult choices new parents must face, one is whether to bank their child’s cord blood. For both our dwarf and non-dwarf child, deciding how to proceed was no easy task. We attempted to research whether there was any special benefit for LP parents or parents of dwarf babies to bank the cord blood, but we did not find anything concrete.
According to the Cord Blood Registry: “For inherited genetic conditions, the child will not be able to use his or her own stem cells. A matched sibling’s stem cells would be the first choice.” If you find any published research showing an extra benefit for cord blood banking with dwarfism, please let us know in the comments so we can spread the word.
What Is Cord Blood and Why Does It Matter?
Cord blood is what remains in the umbilical cord after it has been cut during delivery. This blood contains stem cells that can be used for a variety of medical treatments. There is only one chance in a person’s lifetime to store this blood — right after birth. According to the Cord Blood Registry, some cancers, blood disorders, immune disorders, and metabolic disorders can be treated with cord blood or other stem cells such as bone marrow.
Cost of Storing Cord Blood
This post was first written in 2011 and the pricing figures below have changed significantly since then. We are leaving the original figures for historical context but strongly recommend checking directly with cord blood registries for current pricing — costs vary by provider and have shifted considerably over the past decade.
~$2,000 initial processing + ~$125/year storage. Prepayment discounts available but 25 years of storage still exceeded $2,000 beyond the initial cost.
~$3,000 initial processing + ~$250/year storage. Registries can now store both cord blood and cord tissue, which contains a different type of stem cell.
Public cord blood banks accept donations at no cost to the family. The blood is available for any matched patient in need. No storage fees, but you give up exclusive access to the sample.
The Geneticist Tip We Wish More LP Families Knew
For our second child, our geneticist gave us a suggestion we hadn’t heard anywhere else: instead of banking cord blood at significant expense, simply ask your obstetrician to pull a couple of purple-top tubes from the cord blood right after delivery and send them for a targeted genetic test.
Because pseudoachondroplasia does not present radiologically until age 2–3, we wanted to know early whether our daughter had inherited the gene. Using cord blood for this test eliminated one painful blood draw for our newborn — the sample was already being collected, so no additional poke was needed.
We wouldn’t raise our child any differently based on the result, but knowing early allowed us to plan better for her future health care. If you are an LP family with a genetic diagnosis and want to test your newborn, ask your geneticist about this approach before delivery so your OB can be prepared.
Our Decision
Most likely you will be faced with one or more brochures from cord blood registries at your obstetrician’s office. Some companies even offer gift cards for speaking with a representative by phone. In the end, we decided against storing cord blood for both our children. The cost was definitely a factor — but more importantly, we did not find sufficient evidence that banking would provide a meaningful benefit specific to our family’s genetic situation. If we had encountered compelling research showing that cord blood banking offered a concrete benefit for LP families, we might have been swayed.
This is a deeply personal decision and there is no universally right answer. Families with a history of conditions that cord blood stem cells can treat — blood disorders, certain cancers, immune conditions — have a stronger concrete case for banking. For LP families where the primary concern is the dwarfism diagnosis itself, the current medical consensus is that the child’s own cord blood cannot be used to treat an inherited genetic condition.
Did you bank cord blood for your LP child? Has your family used it or found it useful? And if you’ve heard of any research showing a specific benefit for dwarfism families, please share it in the comments — we’d love to update this post with any new findings.
