Parents of newborns usually have several emotions running through their minds, including love, joy, fear, and awe. But my wife and I experienced one emotion that isn’t very common: terror. That’s because our infant daughter was diagnosed with a fatal illness.
Rose was our first born. She was only 2 months old when she developed an odd rash. I’m a pediatrician, and my wife is a pediatric nurse, so we recognized the rash as petechiae, or little dots of red that represent broken blood vessels in the skin. This is usually a worrisome sign in a baby. Later, tests confirmed our fear.
Rose had a platelet count of 4,000. The normal range is 150,000 to 350,000. That meant one good bump to the head could result in massive bleeding in her brain.
That was the beginning of a long nightmare for my family. Rose was hospitalized, given platelet transfusions, and stabilized. We started a long process to determine the cause of her problem. After a few months, specialists diagnosed Rose with aplastic anemia, a condition where the bone marrow fails to work effectively.
Bone marrow, the soft, spongy center of your bones, is a biological factory that produces all three elements of blood: red blood cells to carry oxygen, white blood cells to fight infection, and platelets to heal and clot.
When the bone marrow fails, as in aplastic anemia, the patient is unable to live without frequent transfusions of blood and platelets. There’s no such thing as a white blood cell transfusion, though there are some medicines that can increase the number of white blood cells.
Fortunately, Rose’s white cells were fine, but her platelets and red cells were deficient. She survived on regular transfusions for almost seven months. But this was all a delaying measure. Rose couldn’t live indefinitely on transfusions. At first, each transfusion lasted a few weeks, but soon they lasted only days. It was not a long-term solution. For Rose, the only way to cure this disease was to give her a bone marrow transplant.
More accurately, a bone marrow transplant is known as a stem cell transplant. When most people hear about stem cells, they think of embryos used for research. But that’s not what a stem cell transplant is.
There are many kinds of stem cells. Some, like those from an embryo, are called pluripotent stem cells. They can become anything in the human body, including the:
- ear lobe
But what a patient like Rose needs is something called hematopoietic stem cells, or stem cells that will turn into only the components of blood: red cells, white cells, and platelets.
Traditionally, these hematopoietic or blood stem cells were harvested by taking them from the bone marrow of a living donor, usually from the hip bone. This is called a bone marrow transplant.
More recently, scientists have figured out a way to take the blood stem cells that are circulating in our blood vessels by removing blood from the donor. This separates out the stem cells, then returns the rest of the blood to the donor while giving just the stem cells to the patient. This is called a peripheral stem cell transplant.
The baby’s umbilical cord is also rich with these blood stem cells. So a third type of transplant is a cord blood transplant: taking the cells of the cord blood of either the patient or some other baby and infusing those cells into the patient. They then migrate to the bone marrow and start producing blood cells.
Many new parents are familiar with this technology because there are private cord blood banks that market their services to expectant mothers. For a fee, the bank will collect and store the newborn’s cord blood, should it ever be needed for a cord blood transplant for that baby or a sibling. Many couples purchase this expensive service as insurance, in case anything like our situation was to happen to them.
But Rose’s case illustrates the fallacy of this logic. In our daughter’s case, the problem was her own blood. Using that cord blood wouldn’t solve the problem at all.
Most pediatric patients “require a donor cord, not their own cord blood,” according to Joanne Kurtzberg, professor of pediatrics at Duke University School of Medicine. She’s the physician who performed the first cord blood transplant in the United States. Dr. Kurtzberg notes that the odds of a child using her own cord blood is “very, very low,” about 1 in 200,000.
So now what? Rose’s cord, even if we had saved it, would’ve been useless. She had no siblings who could donate bone marrow or peripheral blood stem cells. Fortunately, there’s another type of bank you don’t hear about often: a public cord blood bank.
A public cord blood bank collects umbilical cords, which are normally just discarded as medical waste. They type and store them. This is done at no cost to the donating mother. When someone like Rose needs a cord blood transplant, the bank finds a match and sends it to the hospital where it can be used to save a life. The patient receiving the cord (or more accurately, their insurance company) is billed for the cost.
Getting the right match is critically important. The patient’s ethnicity is the key to the match. My wife is of Irish descent, and my grandparents came from Mexico, so finding a match for Rose would be difficult. Minority patients often have a very difficult time finding a match because of the low numbers of donations from minority mothers.
Fortunately, the first public cord blood bank in the United States was established in New York, a true melting pot of the world. Some generous woman whom we will never know donated her baby’s cord to the bank. It was a reasonable match for Rose.
In 1997 at the age of 9 months, Rose underwent a cord blood transplant from this unrelated donor. At that time, it was a risky procedure. Not many centers would do such a transplant. I was lucky enough to be working for one that did: Lurie Children’s Hospital in Chicago. We transplanted Rose, and then waited.
Each night, either my wife or I would have to stay in the room with Rose. There were all kinds of restrictions because of her basically lacking an immune system until the transplant took effect.
She couldn’t have visitors and my wife and I couldn’t leave the hospital floor without taking a shower in the approved bathroom on the unit. Her diet was severely restricted and her toys all had to be specially cleaned and treated. We did all that for a month. But it worked. Rose was discharged home and didn’t need any more transfusions.
There have been ups and downs since then, but our little Rose has blossomed. She is now 19 years old, a freshman at college, and enjoying all that life has to offer. My wife and I know that we are the lucky ones. Not every story like ours has a happy ending.
We’ve learned a lot over the years. But the one thing I try to pass on to expectant parents is that they should consider donating their baby’s umbilical cord to a public cord bank. It’s free to do this.
This is especially important if the mother or father belong to a minority ethnic group. Not every hospital in the country is able to handle such donations, but many are. A full list of hospitals and more information can be found at www.bethematch.org.
Twenty years ago, a stranger’s gift of something that would normally be thrown away meant the difference between life and death for Rose. Science, innovation, technology, and the generosity of the human spirit conspired and blessed us with a cord that saved our daughter’s life. We will be forever grateful to that woman.