Newsletter - February 2013
Cord Blood Collection Kits
Many parents elect to save their newborn infant's umbilical cord blood in either a public cord blood bank that accepts free donations or a family cord blood bank that charges for private storage. Typically the first step towards banking cord blood is when the mother receives a collection kit that she must safeguard and have ready at the time of birth. This article explains the contents of collection kits and gives parents advice on how to keep them safe.
Cord blood collection kits make cord blood storage options available to many expectant mothers. Most public cord blood banks only accept donations from a limited number of large hospitals where they have staff to collect the cord blood. By comparison, the collection kit model of cord blood banking can be used in a wider variety of settings and locations. The mother's healthcare provider performs the collection, and hence should be trained in the optimum collection procedures. The kit contains the supplies that are needed at the time of birth, and it is designed to protect the cord blood during transport to the laboratory. Family cord blood banks all rely on collection kits. A few public cord blood banks offer parents the option to donate their baby's cord blood, at no cost to the family, with a mail-in collection kit.
Since public cord blood banks have more stringent requirements than family banks, this article will focus on their mail-in collection kits. In order to mail in a cord blood donation, the expectant mother must meet the donation guidelines, pass a health history screening, and her obstetrician or midwife must complete the required training and accept responsibility to collect the cord blood. Once approved for mail-in donation, the mother receives a collection kit about two weeks before the baby's expected birth date. The collection kit consists of a shipping box containing the following:
- all supplies required to collect the umbilical cord blood from the baby,
- all supplies required to collect blood samples from the mother,
- collection instructions,
- temperature logger,
- return shipping materials,
- return address labels to ship the kit to the blood bank,
- instructions to the mother for storage of the kit before the birth of her baby, and
- instructions on how to pack the cord blood and maternal blood and ship the kit.
Proper storage of the collection kit before the birth of the baby is just as important as shipping and handling of the kit afterward. Parents should pay attention to and follow the instructions that come with the kit. The blood vials and blood bag inside the kit contain anti-coagulants that prevent blood from clotting while the kit is being shipped to the lab. To preserve the performance of these chemicals, the kit must not be frozen, refrigerated, kept in direct sunlight, stored in the trunk of a car, or any other scenario that will subject the contents to extreme temperatures. Nor should parents open the kit and remove any supplies. The shipping box is designed to protect the supplies and maintain an even temperature. The best way for the mother to safeguard the collection kit is to keep it indoors, so that the kit stays within the same range of temperatures that a person would find comfortable. She can keep the kit with her, or she can rely on a close friend or family member to bring it to the hospital as soon as the goes into labor.
The collection kit contains a temperature logger that monitors the temperature inside the box from the time it leaves the cord blood bank until it is returned to the bank. This is another reason why supplies should not be removed from the kit. The temperature logger is set by the bank, so it does not need to be turned on or off by the mother or the hospital staff. When the mother goes to the hospital to give birth, only then is the kit handed over to the hospital staff.
Cord blood is collected immediately after the birth of the baby. At that time, the healthcare provider who has trained to perform the collection will use the supplies in the kit to collect as much umbilical cord blood as is feasible. Blood samples are also collected from the mother at the time of birth. The healthcare provider completes the forms in the kit and labels the cord blood collection bag with the mother's identification details, which normally is the mother's hospital label. The labeled collection bag is placed into a zip-seal bag. If the collection bag is not labeled, the donated blood will be discarded upon receipt at the cord blood bank.
Finally, the cord blood must be shipped to the lab. The bag holding the baby's cord blood and the vials holding the mother's blood samples are packaged back into the shipping box according to the instructions. Again it is important to keep the contents of the box close to room temperature. The packaging is designed to maintain an even temperature during transport and to protect the blood samples during routine handling. The cord blood must be shipped to the bank as soon as possible, so that it arrives within the specified time (normally 36 hours from the time of collection). If the donation arrives after the specified time, the stem cells in the cord blood may no longer be viable and cannot be stored.
When parents choose to donate their baby's cord blood, they give birth to hope for others at the same time that they welcome a new life into their family. Parents can arrange for a friend or family member to take responsibility for packing and shipping the collection kit, so that they can focus on their new baby. The hospital staff generally does not have time to perform this task. Collection kit instructions are simple and the kit is robust if it is not abused. Proper handling of the collection kit insures that the irreplaceable cord blood reaches the bank in the best possible condition to provide healthy cells that have the ability to do what they need to do when the time comes.
Sisters by Heart: Supporting Families and Children Living with Half a Heart
"There is something wrong with your baby's heart."
Hearing those words from a doctor's mouth is completely devastating and immobilizing, often spurring the feelings of hopelessness, anxiety, fear and helplessness. Those words are spoken far too often. Every 15 minutes, a child is born with a congenital heart defect (1).
Despite the prevalence of congenital heart defects, public awareness and funding for research remains dismal. With a lack of resources and research, parents facing new diagnoses are often left in the dark, with little hope from even the medical community at large. In December of 2010, ten women came together to change that stigma - to offer hope in the midst of darkness.
The idea of Sisters by Heart began as simple act of kindness, a heart-felt Pay It Forward. Co-founders of Sisters by Heart gave birth to children with a severe congenital heart defect - Hypoplastic Left Heart Syndrome (HLHS) - a defect in which the left ventricle of the heart is severely underdeveloped and non-functioning (2). Survival rates for HLHS children continue to improve since the first reconstructive surgery trials in the 1980's, however the diagnosis remains extremely challenging. Immediate survival is dependent upon open heart surgery for cardiac reconstruction which occurs over several years, with the first staged reconstruction taking place within the first few days of life.
Knowing the devastation that accompanies an HLHS diagnosis and the lack of hope found in their own journeys, the founders of Sisters by Heart dreamt of creating a hopeful, safe and empowering organization for families facing this life-threatening defect. After only a few days of brainstorming, the determined women designed a logo, a website and created care packages specially designed for new HLHS families.
Sisters by Heart's care packages are not filled with "typical" newborn gifts - they include side snap Onesies and newborn hospital gowns for easy access to chest tubes, heart monitoring leads and IVs; Babylegs legwarmers to keep legs warm and free for pulse ox probes; hand sanitizer; journals for parents to jot down medical information or questions for their child's physicians; resource brochures; and hospital-grade pacifiers to promote sucking reflexes while awaiting surgery. After sending out a handful of these specially-designed care packages to families found through social media sites, Sisters by Heart obtained its 501(c)(3) status in order to reach more families.
In the past year, with growing popularity and need, Sisters by Heart expanded outreach to all families affected by HLHS, from those prenatally diagnosed, to adult survivors, to those whose children have passed away, through an online network called Linked by Heart.
In just two years since its inception, Sisters by Heart has shipped over 400 care packages (and counting) to families in the United States and Canada, and supported thousands of congenital heart defect families. The mission and goal of Sisters by Heart remains strong: to provide hope and connectivity, and to empower one another to share information, research, and knowledge for HLHS families.
Sisters by Heart's President, Stacey Lihn, mother to Zoe Madison, explains the urgency for parents raising children with HLHS:
"To brighten the future for our children, we depend on advancements reached through research and clinical trials. Much of the feedback we receive from families within the congenital heart defect community is the HOPE that stem cell therapy holds for our children. With the fast-growing number of children surviving and thriving with once-fatal congenital heart defects, we encourage innovation. We encourage cultivating the caregiver/physician relationship, to work together to enhance and promote progress. We welcome discussions with physicians, cardiac research centers, and scientific researchers regarding new and upcoming therapies, quite simply because our children's lives depend on it. We want to assist the medical community and researchers in improving survival rates, improving quality of life and longevity. We refuse to accept that our children's fates are dismal. We refuse to outlive our children."
Thirty years ago, all children born with HLHS had no hope of survival. We now have hope. Lots of hope which we continue to spread throughout our congenital heart defect community. We're optimistic, as are our children's pediatric cardiologists and cardiac surgeons across the country.
Help Sisters by Heart by raising awareness for America's number one birth defect, help fund innovative research and support local congenital heart organizations. Without awareness, Congenital Heart Defects will go on as a silent killer.
With awareness comes funding. With funding comes research. With research comes hope. With hope comes life.
To learn more about Sisters by Heart or support its mission of hope, please visit www.sisters-by-heart.org.
Stem Cells for Cardiac Patients
Heart and vascular disease (or cardiovascular disease, CVD) are the leading causes of death and disability in the world, despite a large proportion of it being preventable.
In the US alone, 82.6 million Americans have some form of CVD. Someone dies from CVD every 33 seconds. More than 40,000 children are born each year with a congenital heart defect.
One of the most promising new avenues for CVD treatment is the use of adult stem cells, to help heal and regenerate damaged hearts.
How can stem cells help the heart?
Stem cells are actually part of our natural circulating rescue system. They travel out of the bone marrow and patrol the circulation system looking for areas of injury to repair. We also have resident stem cells in every organ of the body.
Our first-in-the-world stem cell research at the the Stem Cell Center of the Texas Heart Institute, and subsequent clinical trials in humans, have shown that a patient's own stem cells, harvested from their bone marrow, can help generate new heart muscle tissues and blood vessels in hearts damaged by heart attacks or severe heart failure.
Advances in Stem Cells
After years of study, we have found that when people reach their early 60s, and they begin to have health issues with their bodies, their stem cells also lose their restorative powers. Subsequent research has shown, however, that certain specific cells can be taken from the body fat or bone marrow of healthy young individuals and may be used therapeutically in older patients without adverse immunological reaction. Clinical trials are ongoing and we are constantly learning more about this.
As a result of this work, the National Heart Lung and Blood Institute has established a nationwide consortium of leading medical and research institutions, the Cardiovascular Cell Therapy Research Network (CCTRN), to carry cardiac cell therapy research forward. We are very optimistic about the future of this type of stem cell therapy.
Building New Organs and Reversing Disease
Another area of great promise is the emerging field of regenerative medicine. Dr. Doris Taylor recently joined the Texas Heart Institute as Director of Regenerative Medicine Research. Through her pioneering work, we now have the capability to deplete animal and human hearts of all of their cellular structure and regenerate the "decellularized" scaffolds into healthy organs by the infusion of stem cells. These methods also work on other organs in the body. Many believe that these "bioartificial" organs are the early steps toward our ability to grow new organs for people using their own adult stem cells. We are optimistic that the technology will allow us to begin safe clinical trials in humans within only a few years.
In sum, many advances in stem cells, genetics, and regenerative medicine hold great promise and these fields are advancing rapidly. The next decade or more will undoubtedly be a golden age for progress. We are determined to push the field forward until heart and vascular disease are a thing of the past and our children have a more heart-healthy future ahead of them.