Monday, January 24, 2005

Infant Heart Desperately Needed

Please share this with people you know. I got this from a friend/colleague of mine, Melanie, who personally knows the new parents of Jordan. Jordan desperately needs a heart transplant within the next few days. He's a newborn baby. Thanks for sending this to more people. Read below for details. If you know anyone who can donate an infant-size heart, please contact them. Thanks.

My friend sent this email:

Hi everyone,

I rarely-to-never send out large emails like this, but this is really important. Literally a matter of life or death.

A few days ago my friend Jeff and his wife Sadaf gave birth to a baby boy named Jordan. Although none of the prenatal tests showed signs of any problems, they were soon told that Jordan has a large, and rare tumor in his heart. Open heart surgery was performed, and part of the tumor was removed, but the doctors couldn't get all of it out; it is embedded in the heart muscle. Jordan needs a heart transplant, and he needs to get it within the next 2-3 days. If he doesn't get it by then, his other organs will fail.

There are articles about their situation in today's NY Post and Daily News, and several news stations aired their story. Although Jordan is the first on the waiting list for a new heart, the problem is actually finding one...in 2-3 days.

I am forwarding this to all of you with the hopes of a miracle; someone having a connection, or knowledge of a person or family who can help. If you have any information, or any possible leads, please get in touch with me. You can see Jordan and read about their story on jordanzane.com

Thanks so much for your time.

Melanie


From Jordan's father...

Subject: Fw: Jordan's status - 1/21/05

I'm sure most of you know about our very unfortunate situation. Below is an email from my wife explaining what's going on. We're trying to get the word out about my baby's desperate need for a heart transplant. There are articles in today's papers and ch. 11 did a story last night. We are also asking people to forward our web site - jordanzane.com - to as many people as possible to increase my son's chances of finding a donor. He's already at the top of the list, but the chances of him receiving one in time are very small. We're hoping to convince someone out there who was not going to donate their baby's organs to do so for our baby Jordan.

We deeply appreciate anything you are willing to do.

Thanks, Jeff


Hi everyone,

please excuse yet another group email. So many of you have taken the time to write personally, stop by, and call, asking about Jordan..I wish I could individually respond to each of you and let you know what's going on. Unfortunately, I can't do that right now.

Jordan underwent open heart surgery this morning at Columbia Presbyterian Children's Hospital. He was operated on by a surgeon who we have discovered is considered among the best in the country. The hospital itself is amazing - staffed by practitioners whose handling of neonatal intensive care is beyond imagination. It takes a special gift to be able to care for the type of infants these people see daily.

Jordan's surgery was to remove a 3.5 cm tumor mass in his lower left ventricle. The tumor, whose pathology is still unknown, was blocking the majority of the lower chamber - the critical "pumping chamber" of the heart. Although the surgical team was able to remove a large portion of the mass, the remaining tumor has infiltrated the walls of the heart itself in such a way so as to compromise the heart's functioning significantly.

The only viable option that remains is a heart
transplant. Although the success rate in finding organs for transplant generally is 70%, the rate for finding a heart transplant for a newborn - a "neonate" as they call it, is slim to none. Hearts for infants born normally at 42 weeks - such as Jordan, don't often exist. The situation is further complicated by the time constraints involved. Due to the nature of the life support system Jordan is currently surviving on, his transplant must occur within a window of 5 days. The machinery that is being used to stabilize him brings with it its own set of complications that will ultimately result in Jordan's suffering from blood loss and neurological compromise. That's something neither the doctors nor I will see happen.

As to specifics, Jordan can accept a heart from a newborn up to 15 pounds and of any blood type.

So, that's where we stand. Jordan's been placed on a waiting list for a heart. Obviously, we're realistic about what this means, and are only allowing ourselves to believe that if a miracle is waiting in the wings somewhere, we hope it finds us. We're trying to do everything humanly possible to make that happen somehow. Close friends and family have put us in touch with media resources interested in promoting organ donor stories, etc. We've been interviewed already for a story in the Post, there may possibly be a segment on one of the local news shows, and the hospital has also been contacted by NBC for some type of story that I don't know all the details of yet.

On a personal level, every time I want to collapse and cry, I am reminded of how amazing an experience it was delivering this baby, and of the hours we spent with him over the next day - when we held him in our arms, kept him beside us in our hospital room, fed him, dressed him, and witnessed his interactions with us.

Literally until the time the pediatric nurse noticed an irregular heart beat, we would have had no idea there was something wrong with our baby. He looked at us with curious eyes, interacted to all our talking and singing to him, he ate well, and appeared to have all the normal baby reflexes we spent so much time learning about. I never really imagined what I would feel upon giving birth - other than pain. But what I experienced and felt were undescribeable in terms that make sense - it felt golden..like rays of sunshine. I don't think I could ever forget that.

I wish I knew what caused this nightmare to happen.

No one can explain this to me, other than to say it seems like some random freak twist of fate that somehow decided to hit us. As most of you know, my pregnancy was uneventful. I often commented that I felt great, and that all of my prenatal visits
appeared routine.

Jeff had set up a website with some pregnancy pictures and ultrasounds that we had shared with family. Since this has happened, he's updated it to keep people informed who've asked and to use as a reference for media inquiries. If anyone is interested, this is thelink

www.jordanzane.com

I've also attached a few pics so you could see what he looked like immediately after he was born.

Thanks again for all of your kindness. Jeff and I are praying that something good comes out of this.

love,
Sadaf