History of Website

It all began when I started shopping around for a company to privately bank the cord blood of my second child. Since my first child had been treated at three different cancer centers and underwent a bone marrow transplant, I knew a lot of pediatric oncologists. So I asked them for recommendations. I was surprised to discover that even physicians who transplant cord blood are shockingly ignorant of the commercial storage business. My obstetrician and perinatologist were no help either. Although they had harvested cord blood for other patients, they had no information on the subject beyond a few brochures from various companies.

I turned to the internet. Well, you have probably noticed by now that most cord blood banks advertise aggressively on the internet. Unfortunately, their web sites usually focus on convincing you to bank your baby's cord blood, and say very little about exactly what services they provide or how they compare to other companies. Many times, you won't learn much more by reading their written literature or even their legal contract.

I found it necessary to compile a list of questions which I used to interview each company. Generally, the first "customer services representative" that I spoke to had no knowledge whatsoever of the actual laboratory handling of the blood or the medical reasons for the various steps. It took multiple calls to each company, inquiries to physicians in blood banking, and hundreds of hours to assemble comparison profiles of the companies then in the market. I began to realize that I should make this summary available to other parents, so that no one would have to duplicate my efforts.

I had been searching for some type of charity project that I could do in memory of my daughter Shai, and I have come to realize that this web site is my gift.

The original website was designed by Arlene E. Jacobs, M.S., a bereaved mother that I met on the internet.  Arlene had lost her son Kevin to Severe Combined Immune Deficiency  (SCID).  Arlene has a website devoted to Kevin's Story.

Kevin W. Jacobs
May 17, 1992 - Nov. 22, 1993

At the time I started the research for this website, I did not know how to create web pages.  Arlene volunteered a great deal of time and effort to set up the web pages for me.  The original web layout was in a format known as "frames".  The colors of the design had a hidden meaning:  the background was salmon pink, because that was Shai's favorite color.  The buttons resembled blood drops.  The web links were in purple, because Arlene and I agree that purple is our favorite color.  

Two years later, I learned to write HTML code and started managing the pages myself, but I continued to use Arlene's original layout, buttons, and dividers.   In the end, I stayed with her design for 7 years, until summer 2005.  By then I had added so many pages that the list of  buttons ran way off the bottom of the screen.  It was clear that I needed to move to a more modern web design, with better content management software.

 I moved the Parent's Guide from a free account at Geocities to Heller Internet Services. This server is faster, has no advertising, has frequent back-ups, and numerous customer services that you get when you pay for web hosting.

With the server move, I also revised the format of the web site:  Originally, after each question in the questionnaire, we listed the answers from each bank.  That format was becoming very difficult to maintain as more companies entered the market and the operating banks changed their practices on a regular basis.  Instead, I just listed the recommended questions and left it up to parents to get current answers.

I registered the internet domain name, "www.ParentsGuideCordBlood.com"

Start of the Featured Patient service

The original title of the website was "Parents Guide to Private Cord Blood Banks", but as of Sept 2003 it became "Parents Guide to Cord Blood Banks".   I feel it is my responsibility to inform parents about ALL forms of cord blood banking.  Many parents wish to donate their child's cord blood to a public bank, but most find there is no public bank accepting donations at the hospital where they will deliver.  I find myself frequently assisting parents with public bank inquiries and searches.  Hence I have broadened my content to describe the different types of cord blood banks, and to list the public banks in the United States. 

Public cord blood banks are much more diverse than private banks.  Every private bank has the same business model:  They are for-profit businesses which will store your child's cord blood for a fee.  Public banks vary in terms of their medical operations and their business model.  Some public banks are devoted primarily to archiving cord blood for transplants, others primarily sell cord blood donations to research labs.  Some public banks are non-profit institutions and some are for-profit businesses.  It is challenging to explain these complication to parents.

Furthermore, no public bank can promise that you child's cord blood will still be in the bank if you should need it someday.  Yet many parents have this misconception.  Indeed, because their medical standards are so strict and their financial operations are tightly constrained, most public banks discard about half of the donations they receive.

Starting in the spring of 2005, the Parents Guide received a new look and a new software system for content management.  This "extreme makeover" was created by Michael  Hömke of the design firm exusu-design (exusu-design).  I planned the button layout, but Michael  Hömke designed the artwork and fonts.

The new web design was partially sponsored by the private bank VITA34, but the balance was paid by Frances Verter.  The content continues to be solely owned and controlled by Frances Verter.

I want to personally thank Frank Schott of VITA34 for volunteering many hours of his time to move the text of the web pages into the new software.  Frank also suggested many design improvements which I adopted, so that in the process he became a co-designer of the new layout. 

Frank was supported by Katja Fischer, a trainee at VITA34. Learning to use a content management system was part of her training. She enjoyed combining theoretical knowledge with practical experience.

I believe the long-term future of this industry will be for cord blood banks to compete and consolidate until only a single business model survives.  The surviving type of bank will be for-profit and will be a full-service banking portal which offers parents both options of public donation and/or private storage.  The surviving banks will all sell some portion of their donations to research programs.  Economists call this business model a "hybrid" bank.

The Parents Guide continues to be the only "watchdog" of the cord blood industry.  This year the FDA finally started to regulate some of the medical procedures at private cord blood banks.  However, I still frequently encounter false advertising, both from private banks and public banks.  Parents, be advised that private and public bankers regard themselves as rivals and are inclined to talk trash about each other.  Don't believe everything you hear in interviews or read in the official opinions of medical societies.

In 2007 the The Parents Guide to Cord Blood is incorporating as a non-profit foundation and will apply for IRS status as a 501(c)3 tax-exempt educational organization.