May 2004 Archives

Operating profit at Children's Hospital, Boston, soared 35 percent to $6.5 million in the second quarter of fiscal 2004, compared to $4.8 million for the year-earlier quarter. Revenue rose 16 percent to $194.8 million this year, up from $167.9 million a year ago.

More via The Boston Globe here.

Desperate couples seek court's help, The Asahi Shimbun, Japan.
I found the following in an article today at "Asahi Shimbum, Japan's Leading National Newspaper", the reporter describes what couples and doctors are doing regarding PGD:

One of the plaintiffs, a woman in her 30s, has suffered repeated miscarriages.
``My right to have a healthy baby is being taken away,'' she said. ``Would I be inconveniencing anyone if I used the procedure?''

Ryuichi Ida, a law professor at Kyoto University specializing in medical ethics, noted that Japan and the United States have different value systems.
``Unlike the United States where people are free to do what they want as long as they are not bothering others, in Japan there is still strong opinion on only allowing people to act in ways that do not go against Japanese values,'' Ida said.
``As technology advances, there will be a need for limitations on technology that would eliminate life.''

In my opinion and in my family's case, thanks to the advance in technology we will save a life.

Find the article here:
Desperate couples seek court's help

ATF

Early genetic testing allays fears, ignites ethics debate by By Rita Rubin, USA TODAY.

In an article published yesterday on USA TODAY Rita Rubin said,

"To critics, though ..... the quest for a stem cell donor may be only the first step toward tissue donor mills and designer babies whose IQ and eye color are predetermined"

I would like to meet one of those critics. First of all I would tell them to remember the worst infection they’ve had, maybe diarrhea or maybe even a respiratory viral infection. How did that feel? Did it involve discomfort and pain?
Now imagine that your body is unable to create an adequate defense against that virus, bacteria or fungus attacking your body... Imagine having to be in the hospital for more than 504 days due to life threatening infections and not even the strongest antibiotics helping to cure the infection.
That’s the reason why my 5 year old son Andy has been in the hospital for more than 504 days. He has a genetic condition that causes his immune system to fail.
Andy needs to boost his immune system to live. We've tried all sorts of medications to do that but they only go so far.. We're constantly seeking more treatments and research on his condition. Another option is to substitute his immune system, but for that we need a donor. And if we don't use a suitable donor transplantation may be a higher risk than doing nothing.
Preimplantation Genetic Diagnosis helped us find a 100% compatible sister. My daughter Sofia without knowing donated blood from her umbilical cord to cure Andy.
What would be wrong is not to take the PGD option knowing that this will help a child who has been through so much.
And I would also tell those critics that it's not as easy as it sounds. The in vitro fertilization and pre implantation genetic diagnosis procedures are not easy. I can't imagine someone willing to go through all the stress and procedures involved just to find blue eyes.

Find Rita Rubin's article here:
Early genetic testing allays fears, ignites ethics debate by Rita Rubin, USA TODAY.

A thank you note from Dr. Espinosa in Mexico to Dr. Geha:

----------------

Dr. Raif S. Geha
Prince Turki bin Abdul Aziz Al-Saud
Professor of Pediatrics
Harvard Medical School
Chief Division of Immunology
Children's Hospital Boston

Dear Dr. Geha,

I am Dr. Francisco J. Espinosa-Rosales and I am the chief of the immunology department at the "Instituto Nacional de Pediatría" (National Institute of Pediatrics) in Mexico City.

The purpose of this communication is to inform you that We received trough Mr. Andrés Treviño 50 grams of IVIG.

We really appreciate your donation and I want to tell you those 50 grams were used as soon as they arrived in a little girl with a severe form of lupus nephritis with severe hypogammaglobulinemia and sepsis. We could not use any immunosuppresive drug because of the sepsis and the lupus was very active. The girl is actually doing very well at home .

In our Department We have the largest primary immunodeficiency and rheumatology clinics in Mexico. We have been designated as the National reference center for Immunodeficiency diagnosis and treatment.

Thanks again for your help and I look forwar to meet you in the near future.


Sincerely,

Dr. Francisco J. Espinosa-Rosales
Chief of the Immunology Department
Instituto Nacional de Pediatría
Insurgentes Sur 3700-C col. Insurgentes Cuicuilco, Mexico City, MEXICO 04530

------------------

15 de Mayo, 2004

En el jardin de los Tios Victor y Nat.

Foto tomada por Mariana Sobrino.

ATF

El día de hoy recibi este mensaje:

a quien corresponda
quiero hacer una donacion de mi medula, pero enmexico hay
muchso impedimentos, quiero ayudar a alguna persona y que me puedan ayudar a mi, soy adulto de 50 años
por favor ayudenme
gracias
-----@hotmail.com

Parents with sick kids turning to siblings' stem cells, By Rita Rubin, USA TODAY

In an article published yesterday on USA TODAY Rita Rubin said,

"Some ethicists have expressed concern about using technology to create children who would be tissue donors for siblings. They cite a lack of information about the impact on the children involved."
The ethicists must have had a difficult chilhood..
What a great way to start life! Even before these children are born they bring the gift of life. Talk about a curriculum vitae!
They bring cells that cure their brothers or sisters, they give them a chance to live long enough to play and maybe even tell them thank you (not required). Without those cells they would not live long enough to meet them...

Then she says,

"But Susan Wolf, a law and medicine professor at the University of Minnesota, asks how doctors can know couples' true motives. Wolf and others have called for safeguards to protect children born after PGD tissue-typing until they are old enough to decide whether they want to donate more tissue to their sibling if needed."

WOW! What are Susan's motives, I would ask?
I guess Susan Wolf thinks that having a baby is an easy task.... And if she has children I guess she waited until they were 21 to give them vaccines.. Or she waited until her children were 21 to throw away their umbilical cord... Guess what? Susan Wolf's parents threw away her umbilical cord and they didnt ask her!! How irresponsible...

Find Rita Rubin's article here:
Parents with sick kids turning to siblings' stem cells, by Rita Rubin, USA TODAY

Clinic aids parents who seek 'designer baby' to help save sick sibling. By Victoria Griffith in Boston.

In an article today by Victoria Griffith in Boston she talks about the report at the Journal of the American Medical Association - JAMA where Reproductive Genetics Institute - RGI presents their experience with 13 couples between 2002-2003 wanting to have a HLA compatible baby.

She said,
"Another five potential stem cell donors have been born around the world.... The couples are from Asia, the Middle East and South America as well as the UK and the US".

Interesting...

And she also said,
"In the view of some critics, the fact that the babies mentioned in the journal report did not experience such a benefit (according to Griffith, none of the couples have done a bone marrow transplant procedure.) puts the science on a slippery slope. If embryos can be selected for stem cell matches then why not for trivial traits such as eye colour or height?"

PGD is very useful and a very good option for families that know about their genetic condition that causes serious health problems. In my opinion, its very important to know the genetic cause of a disease and more important to use that information to find options for a cure.

I guess that if all parents (that have an adequate age to have babies) with children that have a terminal disease are given this option, more than 80% would take it.

PGD is specially helpful for us because we could not find a compatible donor for Andy and bone marrow transplantation is the option we have today. The bone marrow transplant seems to be the only treatment that will allow him to live to be an adult.

I can't imagine someone undergoing IVF and PGD looking for eye color or height... Seems to me that this procedure is too much for that. But there are people who request surgery just to look better, so I guess PGD would catch their attention and they would be willing to do whatever it takes to have a baby with blue eyes.

The solution to this problem would be to find a treatment that corrects the lack of intelligence of parents looking for a baby with a specific height or eye color.

Doctors should know... if they want to help someone who's just looking for blue eyes.... PGD shouldn't be used for that...

Now I know why Sofia is so beautiful!!