This is an awesome episode of ER where they talk about heart defects & they're at Came Del Corazon =D This is awesome for the CHD community!!

PORTLAND, Ore. - A Portland family is fighting for the life of their baby boy, who needs a heart transplant or will die.

But a $1.5 million price tag is standing in the way of his survival.

Rejected by the hospitals that could save his life, 10-week-old Laith Dougherty can't even get on a waiting list for a new heart.

“It just astounds me that our health care system would let children die," said the baby’s mother, Ghadah Makoshi.

Laith was born early and initially needed help breathing and for other complications. But his mother said he went home after eight days and seemed healthy until they noticed weeks later that he did not seem to be eating as much as he should. Further tests eventually revealed the baby had a congenital heart defect, Makoshi said.

Doctors told the family the baby's heart is too weak for surgery and the only option for survival is a heart transplant.

Now inside OHSU’s Pediatric Intensive Care Unit, doctors can only monitor Laith's condition. OHSU doesn't offer transplants for babies, and the out-of-state hospitals that do have told his family "No."

“For Seattle's or for any other hospital who thinks it's just, you know, a matter of numbers, and, you know, ‘Fine, we're just not going to accept that case,’ you're essentially writing a death sentence," Makoshi said.

The mother said Seattle's Children's Hospital told her it needs $1.5 million to give Laith a transplant. But the child needs a heart now.

“Probably what was the hardest thing to hear from the doctor was that, 'If you don't get insurance, then at some point, you're going to need to decide how you want him to die,' " Makoshi said.

She and her husband do have health insurance, but it doesn't cover transplants.

“I just can't understand how anybody could turn him down for a heart,” she said. “I just don't.”

The mother said she is asking for donations and also for people to write their state representatives and senators.

LEARN MORE ABOUT HOW YOU CAN HELP LAITH

Seattle Children's Hospital on Tuesday released this statement about Laith's case:

"It pains us to be in a position where we cannot provide health care services to all children who need them. We receive requests for financial support from families throughout the world and unfortunately do not have funds to care for every child in need.

We are committed to providing health care to children in the WAMI region (Washington, Alaska, Montana and Idaho) regardless of a family’s ability to pay. Unfortunately we do not have the funding to make the same commitment to children outside our four-state area. Patients who live outside our region are encouraged to work with their insurance company and members of their communities to raise the money needed to be seen at Children’s.

Children’s provided more than $86 million in un- and under-compensated care in FY 07/08 and that number is expected to grow to more than $100 million in FY 2009."

http://www.katu.com/news/40122542.html

http://laithdougherty.info/

Two Little Sisters Both Have Rare Heart Disease; So Far, One Has Received A Donor Heart

(CBS) 
..
Sunday was the first day that 7-year-old Emily Smith was able to visit
the hospital playroom since receiving her new heart. It is a small step
to getting her life back to normal.


"You can tell that she wants to play soccer but she can't. Now that she has her heart, she can," said her big sister, Shayde.



Shayde is 9 and knows a bit about what Emily is going through. She
has the very same condition, called restrictive cardiomyopathy, in
which the heart doesn't relax as it should between pumps, so it doesn't
properly fill with blood.


"Less than 1 in a million are diagnosed with this type of heart disease," Dr. Kristine Guleserian of Children's Medical Center in Dallas told CBS News correspondent Hari Sreenivasen. "To have two family members, it is even more rare. To have two sisters with it who are so close in age is incredibly rare."



A transplant is the only cure. If left untreated, this heart
disease can bring on a sudden heart attack or even death - every
parent's worst nightmare.


"You hear a loud thud and you go running, or if one of them
starts screaming 'Mommy! Mommy!' your heart sinks, you go into panic
mode of what just happened," said the girls' mother, Natalie Van Noy.


Emily waited 9 months for a donor heart, while Shayde is still waiting for hers. The transplant surgery took doctors five hours.



On CBS' The Early Show, Van Noy said that the wait for a donor heart for Emily has been extremely difficult.



"We've been in pretty much panic mode, waiting on a new heart. We
were told after the first year, it was 50/50 on the survival rate. It's
been hard."


"What is this like for you to start all over again [for Shayde]?" Early Show anchor Harry Smith asked.



"Well, the waiting, it's torture, no doubt," Van Noy said. "But as
far as anything different we do, we pretty much keep on the status quo
and keep to our daily lives. We want the girls to feel like they have
normal lives and want to keep it good that way."



The girls' father Matt Smith told Smith that he immediately noticed changes in Emily after she received her new heart.



"Well, the immediate difference is her colors," he said. "Her lips
are vibrant red. And her hands and feet stay warm which is a situation
that was never the case before. I mean, there's already such a marked
improvement, and we're pretty excited about that."



Her parents expect her to be able to leave the hospital on Tuesday or Wednesday.



Shayde is looking forward to the day her mom can stop worrying, and her life can get back to normal.



"When I do my surgery, I'm gonna do gymnastics, then go to cheerleading," she said.



Van Noy said the idea of being able to have the girls' dreams of
gymnastics and cheerleading come true makes the wait worthwhile.


"Oh, it definitely is, it definitely is. It will be a big relief to
know that they can go out in the backyard or go over to a friend's
house and I don't have to constantly worry or send medication or, you
know, all of that kind of stuff. It will be a big relief."



Smith asked Shayde how it was for her having to wait for a new heart.



"Hard," she said.

I found the following story here:

http://www.cbsnews.com/stories/2009/01/26/earlyshow/health/main4753090.shtml

MIAMI - D'Zhana Simmons says she felt like a "fake person" for 118 days when she had no heart beating in her chest.
"But I know that I really was here," the 14-year-old said, "and I did live without a heart."
As she was being released Wednesday from a Miami hospital, the shy
teen seemed in awe of what she's endured. Since July, she's had two
heart transplants and survived with artificial heart pumps — but no
heart — for four months between the transplants.

RELATED: DOCTORS MAKE NEW WINDPIPE FROM STEM CELLS

Last spring D'Zhana and her parents learned she had an enlarged
heart that was too weak to sufficiently pump blood. They traveled from
their home in Clinton, S.C. to Holtz Children's Hospital in Miami for a heart transplant.
But her new heart didn't work properly and could have ruptured so surgeons removed it two days later.
And they did something unusual, especially for a young patient: They
replaced the heart with a pair of artificial pumping devices that kept
blood flowing through her body until she could have a second transplant.
Dr. Peter Wearden, a cardiothoracic surgeon at Children's Hospital of Pittsburgh who works with the kind of pumps used in this case, said what the Miami medical team managed to do "is a big deal."
"For (more than) 100 days, there was no heart in this girl's body? That is pretty amazing," Wearden said.
The pumps, ventricular assist devices, are typically used with a
heart still in place to help the chambers circulate blood. With
D'Zhana's heart removed, doctors at Holtz Children's Hospital crafted
substitute heart chambers using a fabric and connected these to the two
pumps.
Although artificial hearts have been approved for adults, none has
been federally approved for use in children. In general, there are
fewer options for pediatric patients. That's because it's rarer for
them to have these life-threatening conditions, so companies don't
invest as much into technology that could help them, said Dr. Marco Ricci, director of pediatric cardiac surgery at the University of Miami.
He said this case demonstrates that doctors now have one more option.
"In the past, this situation could have been lethal," Ricci said.
And it nearly was. During the almost four months between her two
transplants, D'Zhana wasn't able to breathe on her own half the time.
She also had kidney and liver failure and gastrointestinal bleeding.
Taking a short stroll — when she felt up for it — required the help
of four people, at least one of whom would steer the photocopier-sized
machine that was the external part of the pumping devices.
When D'Zhana was stable enough for another operation, doctors did the second transplant on Oct. 29.
"I truly believe it's a miracle," said her mother, Twolla Anderson.
D'Zhana said now she's grateful for small things: She'll see her five siblings soon, and she can spend time outdoors.
"I'm glad I can walk without the machine," she said, her turquoise
princess top covering most of the scars on her chest. After thanking
the surgeons for helping her, D'Zhana began weeping.
Doctors say she'll be able to do most things that teens do, like
attending school and going out with friends. She will be on lifelong
medication to keep her body from rejecting the donated heart, and
there's a 50-50 chance she'll need another transplant before she turns
30.
For now, though, D'Zhana is looking forward to celebrating another
milestone. On Saturday, she turns 15 and plans to spend the day riding
in a boat off Miami's coast.

The following story was found here:

http://www.cbsnews.com/stories/2008/11/19/earlyshow/health/main4617177.shtml

----------------- Bulletin Message -----------------
From: ANGELina for CHD Awareness Backup Page
Date: Dec 16, 2008 1:03 PM


I have created a CHD Information Brochure to lay out in doctor's offices, kindergartens, schools, hospitals etc... It can be downloaded from my page :

www. angelinas-friends. com

in the Download Section, instructions on how to fold it are in the Forum Section "Matters of the Heart". To avoid any kind of spam, please register on my page.


You can help us so tremendously in printing a couple of them out and lay it out wherever you can.


Thank you truly
Sandra Kay

This was just plain out amazing to read! Please repost this!! This is just WOW!

Cord Blood Stem Cells May Help Repair Babies' Heart Defects

By Rob Waters

Nov. 10 (Bloomberg) -- Umbilical cord blood, rich in stem cells, may provide raw material to repair the hearts of thousands of babies born each year with defective heart valves, according to researchers.

Cardiologists at the University Hospital of Munich say they are 5 years to 7 years away from transplanting new heart valves into children with faulty hearts, derived from the children's own cord blood. The researchers reported the findings today at the annual meeting of the American Heart Association.

Heart valve abnormalities are one of the most common kinds of inherited heart defects. In these babies, the valves are too narrow or don't close as they should, keeping blood from flowing properly. While surgeons can transplant new valves from human or animal donors, or from artificial material, these valves won't grow as children do, forcing kids to undergo repeated operations to outfit them with new, larger valves, said Ralf Sodian, the cardiac surgeon who led the research.

....Imagine you had a child with congenital heart disease and this child has to be operated on every 2 to 3 years,'' Sodian said in a Nov. 7 telephone interview. ....It's very hard for children and parents. The goal is to do surgery once that would last a lifetime.''

Sodian and his colleagues collected umbilical cord blood from babies as they were being delivered and isolated a key group of stem cells that form the main tissues found in heart valves. After freezing the cells for 12 weeks to preserve them, they seeded those onto a biodegradable polymer scaffold in the laboratory.

The eight bio-engineered valves created by Sodian and his team acted much like natural heart valves when they were tested to see how they would handle blood flow and pressure, he said. The scaffolds will dissolve over time, leaving behind a fully formed structure made from the cells, he said.

Lamb Trial

The next step is to test the procedure by implanting heart valves made in this way into the hearts of young lambs, then watching to see how they grow and function over time, Sodian said. He hopes to begin these experiments next year.

Stem cells from umbilical cord blood, like adult stem cells found in the mature tissues of developed humans, have the potential to form many kinds of cells that can repair or replace damage to organs of the body. Since the umbilical cord stem cells aren't derived from human embryos, they don't raise ethical objections like those that led President George W. Bush to limit federal funding for embryonic stem cells research.

Stem cells from human embryos are more versatile, however, since they are able to form any of the roughly 210 cell types found in the body. Advisers to President-elect Barack Obama said yesterday that Obama may move quickly once he takes office on Jan. 20 to undo the Bush restrictions on embryonic stem-cell research by executive order.

To contact the reporter on this story: Rob Waters in San Francisco at rwaters5@bloomberg.net.

Last Updated: November 10, 2008 16:00 EST

Source: http://www.bloomberg.com/apps/news?pid=20601124&sid=aWRs4Rf8yvjY&refer=home

Check out this blog. This is an awesome opportunity to help get awareness out there. Whether you, your child, or your a parent of a CHD Angel get your story out there!! Please repost this!!!

The CHD Blog

http://learnaboutchd.blogspot.com/2008/11/we-need-your-story.html

PLEASE REPOST!

Finally, a reason to have lived through the 70s -- and another fine reason to relive one of disco's most enduring triumphs, the 1977 hit by the Brothers Gibb, "Stayin' Alive": it could save someone's life.

In performing Cardiopulmonary Resuscitation -- CPR -- the perfect rhythm is 100 compressions per minute, and done properly, it can triple a heart arrest victim's chances of survival. But how, when you're saving a life, do you achieve that ideal rhythm of life-saving compressions? Think "Stayin' Alive."

Medical students and physicians trained to perform CPR to the bouncing beat of "Stayin' Alive" maintained close to the ideal rhythm recommended by the American Heart Assn. for chest compressions during CPR, according to a study to be presented Oct. 27 at a Scientific Assembly of the American College of Emergency Physician's annual meeting.

The small study set five med students and 10 physicians to the task of performing CPR to the soundtrack of "Stayin' Alive," a song with exactly 103 beats per minute. Five weeks later (it's not clear whether they got to return to the "Saturday Night Fever" soundtrack for a little disco refresher), the subjects still had their CPR rhythms close to perfect, at an average of 113 beats per minute.

Sure there are other pop songs that clock in at close to 100 beats per minute, said Dr. David Matlock of the University of Illinois Medical School. But could you do better than "Stayin' Alive" under the circumstances?

-- Melissa Healy 

Source: http://latimesblogs.latimes.com/booster_shots/2008/10/lifesaving-ches.html

Heart problems often remain undiagnosed in newborn babies

MedWire News: A significant number of babies are dying soon after birth because of undiagnosed congenital heart disease, a US study suggests.

"Congenital heart disease affects eight to 12 per 1000 live-born infants and is one of the most common and serious types of birth defects," explain Dr Ruey-Kang Chang, from the University of California in Los Angeles, and team. "With early diagnosis, however, most infants with congenital heart disease can benefit from successful surgical repair."

But they add: "Nevertheless, many infants born with congenital heart disease are discharged from the hospital nursery with their conditions undiagnosed."

To examine the extent of the problem, the researchers used the California death registry for the years 1989−2004 to assess data on 898 infants who died of congenital heart disease between birth and 1 year of age.

They found that, in total, 152 of the babies had a missed diagnosis of congenital heart disease. The average age at death was 14 days and more than half of the babies died at home or in the emergency department, indicating that they had been discharged from the postnatal ward.

"Up to 30 infants per year died of a missed or possibly late diagnosis of congenital heart disease in California," the researchers report in the write in the Archives of Pediatric and Adolescent Medicine.

Encouragingly, however, they also found that the number of infant deaths due to congenital heart disease fell over the study period, suggesting some improvements in early detection of heart abnormalities.

Nevertheless, the team says that current screening strategies are inadequate for detecting congenital heart disease and call for a revision of guidelines.

"The American Academy of Pediatrics Recommendations for Preventive Pediatric Health Care should emphasise a careful cardiovascular evaluation for left heart obstructive congenital heart disease during the first post-discharge visit to a pediatrician's office at 3 to 5 days of age," Dr Chang and team conclude.

Source: http://www.patienthealthinternational.com/news/23799.aspx

----------------- Bulletin Message -----------------
From: Gavin♥Cole♥is 3♥
Date: Sep 4, 2008 1:08 PM


----------------- Bulletin Message -----------------
From: Pray for Dakota!
Date: Sep 4, 2008 10:51 AM


this update is from yester day  no new ones yet

Dakota made thourgh the night still critical!!!!
Current mood: scared


Well things are not much better today.

Dakota is still very critical. We had a scary night that has been a rough night. Dakota is now gettingready for to a heart cath. at this time. Its hard to explain what isgoing on at this time for the doctors are not even sure just thatDakota is bleed very heavy. Dakota has had 14 units of blood and 4plasma and many many other meds I will put pics on here shortly. Iwill let you all know as soon as i can more as we go in to the day.



Thank you all for the prays.


Thomas E.

HELM


this Little boy was willing to give his heart to a little girl waiting on a list of children in need of one.  take a moment to pray for him that he is in recovery and on his way to full health.
  We are waiting for an update on him from his parents and are praying that the night went by ok, please pray leave his parents a note of enocouragement please


http://www. myspace. com/sgthardball









    

Update on Heart 5
Current mood: scared

Well I am lost for words, I just found out that they can not stop the bleeding and things are getting worst. Doctors are saying now that Dakota may not make it thourgh the night. I am scared and can not stop crying. I ask for your prayers that things get better and that I get to keep my son here with us here on earth. Well I am sorry this is so hard to type for I can not stop crying. GOD BE WITH HIM PLZZZZZZZZZZZ! With LOVE DAD Thomas E.
HELM

    

update on heart 4

Well we just found out that Dakota is now Bleeding and on some very high amount of blood meds placed in him trying to stop the bleeding. They are now placing Dakota in Critical condition for the next day or two. Now we may take even longer in the surgery. I am getting scared but still know Dakota is in the lords hands and I wait to see where he will take us from here. Lord please be with be with my son and watch over him thought this time.
TY all   


    

update on heart 3

Well its 1530 hours and we lust found out that Dakota is now has his new heart inside him now. They have to now warm up the heart and blood and look for licks in the heart and chest. Then work him off of the heart and lung machine. Still some time to go, praying that things still work out great!!! AMAN I love that Dakota his a fighter.
Ok I will talk to you as soon as I know more!!!


    

update on heart 2

Well its 1330 hours we just found out that he is going to be in surgery for about 8 to 10 hours more to go. Waiting is the hardest part of this. Well they are working on sewing up hold that was made in the past. They are now starting on the putting in the new heart now. Well will talk to you all later.



    

update on heart

Well the old heart is out and they are putting in the new heart in at this time. God be with the Doctors and Dakota at this time help both of them thought this.


t
    

New update Dakota is in Surgery at this time! Pray things going to work out!!

Well its now 1158 hours and Dakotas Heart is here. But at this time Dakota is having problems with bleeding on the inside his chest at this time. They are working .. of the bleeding then moving on to the heart transplant.
I will let you all know more as we go thanks for the prays!

    

Dakota is in Surgery at this time! Pray things going to work out!!

Well at this time Dakota is in Surgery. Dakota is very scared but excited at the same time. There is another young female that needs a heart here and Dakota wanted to give her the heart first. But it would was not a match for her. Dakota is on an emotional roller coaster ride with his feels. We was sleeping good until about 0322 hours we got a call telling us they have a heart for Dakota. We have been on the run every since trying to get ready. Dakota wanted his best friend to be here but she could not make it at this time. Well I ask that everyone keep Dakota in your prays and we like for you to Pray for the family that had a lost of a family member to make this happen for my son. I would thank them but they will not tell us how it was at this time! Well waiting for an update from Doctors. I will let know, Well before I ended they showed up here he is doing good at this time things are looking great donor heart has been delayed about 1 hour. But every thing still ago.




Monday, September 01, 2008
    

A New Heart

At 3:22 am Candi was awakened by a phone call. A Heart has been found for Dakota! They are running xrays and labs as we type this. Please pray for Dakota to help- him get through this time. Definitely pray for the FAMILY that has given this GIFT to us! Pray for peace to fall on all of us. He is very scared. I told him Aunt GIGI and us always pray and ask the Lord to take out his stony heart and give him a new one. That this is a blessing and to ask the lord to help him through this and his fears.





Wednesday, August 27, 2008
    

must read!!!! wrote 2 on Dakota today

Well its 08-27-2008 at 4:40 pm and we just found out Dakota is now a level 1A on the heart Transplant list meaning he is now on the top of the list. Because today Dakota heart is not working very well and is now in CICU they are working on trying to get control of his heart and get us an apartment to live here in St. Louis, MO. with round the clock nurses to watch over him. Well today has been the scariest day so far.
Please keep praying for Dakota and will try to get on here soon!