Tag Archive for CHD

The Annual Knife Through My Heart Got Twistier

We are now on a yearly schedule for my daughter’s cardiologist. Yesterday was a good, if long (3 hours) appointment. The cardiologist and his staff were amused that my daughter brought her own pillow to the examination–they said that was the first time they had seen that in 20 years of practice.

We found out that valve replacement via catheter is now approved in the U.S. and I can only imagine how far the technology will go in the next 6-10 years.

I know I am so very lucky.

Still, the yearly recitation of the heart conditions on both sides of the family just became tragically longer this summer when my father-in-law, a good man and a loving grandfather, passed suddenly and unexpectedly.

And now that my daughter is four, her questions have become a lot more in-depth and probing and difficult to answer honestly, yet reassuringly and on an age-appropriate level.

I had an entire two days of:

Why doesn’t brother have to go to this doctor?

Why doesn’t he have a boo boo on his heart?

Why do I have a boo boo on my heart?

If they fixed the boo boo on my heart, why do they need to keep checking it?

What if it doesn’t look fixed?

Does surgery hurt?

If I have surgery, will they make all of me go to sleep or just part of me go to sleep?

If I wasn’t asleep, would it hurt? Why?

If I don’t have a valve now, why do I need one when I grow up?

What if they weren’t able to fix the boo boo when I was little?

If something happened to me, would you cry?

Did I dream when I was asleep during the operation when I was a little baby?

What did I dream about?

What is blockage? What is leakage?

Still, so lucky her condition was repairable. So very lucky to have a child who is alive and thriving and asking these questions.

And still so very scared sometimes.

I Heart My Tet Baby

This is a tough post for me to write but I just can’t let this week go by without a post about congenital heart conditions.

I’ve been awed by the brave example Kristine has set for our community in honor of her beautiful heart baby Cora. In the face of her love I am speechless. If you know me, you understand how rare an occurrence that is.

But I will force the words and face the fears. Because the stakes are the lives of precious little babies.

My daughter was born with Tetralogy of Fallot but CHD does not define my vibrant little three year old. And as she grows, I am more reluctant to write about her. I want her to have the opportunity to create her own identity and decide for herself how much CHDs are a part of that.

Others don’t have that luxury. They may require medications all their lives, they may not be able to be as active as other children, or there may not be a repair available or the condition may not have been caught in time.

Heart defects are among the most common birth defects–approximately 40,000 babies (1-2%) in the United States are born each year with a heart defect–and they are the leading cause of defect-related infant death. And yet, there is comparatively little funding going into researching the causes of these defects and treatment options.

Without surgery, depending on the exact pathology, tetralogy of fallot has a mortality of 30% of patients by age 2 years to 50% by age 6 years. Only 5% will live to age 20.

However, just one surgery with a very high success rate (95% success in the absence of complicating factors) and my daughter now has a good chance to live a normal life (well, as normal of a life as any child of mine could have with me as her mommy).

I am one of the lucky ones.

And yet, every time I look into her bright, inquisitive eyes, I’m terrified. I’m frightened of the possibility of life without her. And I feel guilty when I think about all of the mothers who do not have that gift because they had to do something even harder–let their baby’s earthly presence go.

I do my best to push those worries aside and focus on how very blessed I am to have my amazing little light in my life.

So, not just for me and my little one, but for all of the parents and babies and adults living with CHD or feeling the absence of a precious life, I am asking you to educate yourselves about CHDs.

We need more screening. A simple, non-invasive test, the pulse oximeter measures oxygen in the blood and can catch many of the most deadly CHDs. Every baby should be screened.

We need public cord banking & donations. Private firms encourage parents to make an expensive investment in cord blood banking but most likely their baby will never need the cord blood and even if they do, it may not be usable or sufficient. But a public bank filled with donations would benefit the children who need it most.

We need more research. Did you know that it may be possible in the future to grow a heart valve from a child’s own cells and then use a catheter to replace the valve, avoiding the potential complications of open heart surgery? New research could save thousands of lives every year and millions of dollars–but research into simple, cost-effective treatments is hard to fund when compared with pharmaceutical research.

What can you do?

Week 20: You Gotta Have Heart

Skipping way ahead to current day. I’m in week 20 and I just had the fetal echo cardiogram. Because my daughter was born with Tetralogy of Fallot, they wanted to check out Junior (oh, yeah, BTW–IT’S A BOY!).

All looks well and I’ve been cleared to proceed as “normal.”

Which begs the question for me, what is normal? I had a midwife last time in Texas, and I’ve found a good midwife practice here in New York. However, I didn’t have the most pleasant labor experience last time around. How much of that was exacerbated or alleviated by being in a hospital, it is hard to say.

Part of me is really starting to feel like hospitals are great–for sick people. But a normal pregnant woman with a normal baby isn’t sick. And it isn’t just the horror stories of healthy pregnant women catching rare awful things from other patients…I’m also just really thinking about why hospitals are necessary for birth.

I’m a fan of Hathor and Crunchy Domestic Goddess, and I’ve been listening and reflecting on what they have to say about home births and the importance of feeling comfortable in your birthing place.

The benefits (in my mind) of a home birth is that it feels more natural and normal to me and I’ll have privacy and can birth the way I wish. The barriers to a home birth include the limited number of nurse-midwives in my area who will attend, the comfort level of other essential participants, and inertia. After all, the path of least resistance is to just go to the hospital. Which is strange, isn’t it? You would think that the easiest thing to do would be to just stay put, but somehow decades of pop culture have made it seem far more normal to rush into a speeding car, climb into a wheel chair, and be propped up in an unfamiliar bed.

My husband missed the birth last time (he was in Iraq), and he is looking forward to it. But I think he would feel more confident having his first time (and yes, his opinion does count here) in a hospital. I can’t forget that although I have a previous experience, this is all fairly new to him.

So, if anyone is actually out there reading…I’d love to hear your experiences with home birth. And I would REALLY love some words of wisdom from your partners. How did they feel about the home birth, before, during and after? Did they need convincing? What made them go for it? How was it? Would they want to do it again?

More Hope for Babies Who Need Heart Valves

A few weeks ago I saw this story in a local paper and I’ve been meaning to share it with you. I am so very excited to read this!!! Here’s an excerpt:

Help for growing hearts
Researchers are using bone-marrow stem cells to make valves that will grow as a child ages

BY DELTHIA RICKS – September 14, 2007

Doctors say they are a significant step closer to producing stem-cell-generated heart valves for children, structures that can grow with the child, eliminating the need for repeat surgeries as now is the case when conventional methods are used.

Medical researchers at Children’s Hospital Boston say they can create the valves from stem cells derived from the bone marrow and coax those cells in the lab to grow into a complete, functioning heart valve.

Dr. John Mayer said the valves should be available for clinical trials within the next three years.

“These are stem cells derived from the bone marrow,” Mayer said. “They are not embryonic stem cells.”

“The scaffold is biodegradable, but it mimics the shape and size of a heart valve,” Martin said, adding that when stem cells are introduced to the scaffold, a lattice frame, in the laboratory “they invade it.”

Surgeons have long been able to repair congenital heart defects in children by implanting artificial valves made of synthetic materials, or they have used valves from pigs. Either way, children grow and need replacements, which means at least two or three repeat surgeries.

Mayer, who is a pediatric heart surgeon, said there are several pediatric heart conditions that lend themselves to repair with a tissue-engineered valve. One such condition is called tetralogy of Fallot, a disorder marked by four significant defects, including a damaged pulmonary valve.

Congenital Heart Defects: Legislative Victories!

If you read this blog, you know about my support of the American Heart Association and my personal experience with heart issues. Today I got this great e-mail from the ACHA in my inbox and I want to share this with you.

Dear ACHA supporter:

We did it!

Thanks to the hundreds of letters, e-mails, and congressional visits made by people like you, both the House and Senate included calls for ACHD funding in the first version of the 2008 budget. To view the full House and Senate bills, click here (House) and here (Senate).

House:
Congenital heart disease -The Committee recognizes that congenital heart disease is a chronic disease affecting approximately 1.8 million Americans. It commends NHLBI for convening a working group to address this issue, and supports its recommendation that action be taken to prevent needless disability and premature mortality in this rapidly-growing population. The Committee urges NHLBI to work with patient associations and other appropriate public health organizations to develop education and research initiatives targeted to the life-long needs of congenital heart disease survivors.

Senate:
Congenital Heart Disease -The Committee commends the NHLBI for convening a working group to address congenital heart diseases, and supports its recommendation that action be taken to prevent needless disability and premature mortality. The Committee urges the NHLBI to work with patient associations, other appropriate NIH Institutes, and the CDC to develop education and research initiatives targeted to the life-long needs of congenital heart defect survivors.

So what’s the next step?
Over the next five months, Congress will work to create and vote on a final 2008 budget bill. We want this call for ACHD funding to make it all the way into the final budget. Once this happens, Congress will then ask federal health and research agencies to tell them how they have responded to this call for action.

So what do we need from you?
Please write or email your members of Congress to let them know why federal support for CHD survivors is important to you. The goal is to make your lawmakers aware of the call for ACHD funding in the budget and to urge their support for CHD survivors.

Think writing a letter won’t make a difference? Think again! Research shows it takes only 10 contacts to make a legislator pay attention to a piece of legislation!

Need some help getting started? Three sample letters and letter-writing tips can be found here.

Find your lawmakers by visiting www.house.gov and www.senate.gov. After you have found your lawmakers, follow the link to their individual web pages. You will find all mailing and email addresses here.

With your help, we can take this all the way!

Advances in Treating Heart Defects: Still So Much to Learn

When it comes to raising money for the American Heart Association, I ain’t too proud to beg.

Here’s an example of the sort of research that may save the lives of babies, like my little Baby Diva. During her life-saving heart operation, they were unable to salvage her valve. At some point she will likely need a replacement.

This new research could mean that one day babies will have a valve made from their own cells that will grow along with them–and therefore not need to be replaced:

CHICAGO, Nov. 17 (AP) — Scientists for the first time have grown human heart valves using stem cells from the fluid that cushions babies in the womb, offering an approach that may be used to repair defective hearts.

The idea is to create new valves in the laboratory while a pregnancy progresses and have them ready to implant in a baby with heart defects after it is born.

The Swiss experiment follows recent successes at growing bladders and blood vessels and suggests that people may one day be able to grow their own replacement heart parts, in some cases, even before they are born.

It is one of several tissue engineering advances that could lead to homegrown heart valves that are more durable and effective than artificial or cadaver valves.

“This may open a whole new therapy concept to the treatment of congenital heart defects,” said Dr. Simon Hoerstrup of the University of Zurich.

Dr. Hoerstrup led the work, which was presented Wednesday at an American Heart Association conference.

Also at the meeting, Japanese researchers said they had grown new heart valves in rabbits using cells from the animals’ own tissue. It was the first time replacement heart valves had been created in this manner, said the lead author, Dr. Kyoko Hayashida.

Dr. Ziyad Hijazi, a University of Chicago cardiologist, said the results of the two studies were “very promising.”

“I don’t doubt” that it will be applied one day in humans, Dr. Hijazi said.

One percent of all newborns, or more than one million babies born worldwide each year, have heart problems. Such defects kill more babies in the United States in the first year of life than any other birth defects, according to the National Institutes of Health.

Defects in heart valves can be detected during pregnancy with ultrasound tests at about 20 weeks. At least one-third of afflicted infants have problems that could be treated with replacement valves, Dr. Hoerstrup said.

Conventional procedures to fix faulty heart valves have drawbacks. Artificial valves are prone to blood clots, and patients must take anti-clotting drugs for life.

Valves from human cadavers or animals can deteriorate, requiring repeated open-heart surgeries to replace them, Dr. Hijazi said. That is especially true in children because such valves do not grow along with the body.

Valves made from the patient’s own cells are living tissue and might be able to grow with the patient, said Dr. Hayashida, who is with the National Cardiovascular Center Research Institute in Osaka.

The Swiss procedure has an additional advantage. Using cells the fetus sheds in amniotic fluid avoids controversy because it does not involve destroying embryos to get stem cells.

“This is an ethical advantage,” Dr. Hoerstrup said.

Here is how the experiment worked: Amniotic fluid was obtained through a needle inserted into the womb during amniocentesis, a prenatal test for birth defects. Fetal stem cells were isolated from the fluid, cultured in a laboratory dish, then placed on a mold shaped like a small ink pen and made of biodegradable plastic.

It took four to six weeks to grow each of the 12 valves created in the experiment. The researchers said laboratory tests showed they appeared to function normally.

The next step is to see if they work in sheep, a two-year experiment that Dr. Hoerstrup said was under way.

He and his co-researcher, Dorthe Schmidt, called their method “a promising, low-risk approach enabling the prenatal fabrication of heart valves ready to use at birth.”

Dr. Hoerstrup said amniotic stem cells could also be frozen for years and could potentially be used to create replacement parts for aging or diseased valves in adults, too.

The research is preliminary, and experts say implanting tissue-engineered valves in human hearts is probably years away. But it is not far-fetched. Earlier this year, American scientists reported re-engineering diseased bladders with tissue grown from the patients’ own cells.

And last year, researchers reported that two kidney dialysis patients from Argentina had received the world’s first tissue-engineered blood vessels, fashioned from their own skin and vein tissue.

Dr. John E. Mayer Jr., a Children’s Hospital Boston heart surgeon and a pioneer in tissue engineering, said scientists were optimistic that research would revolutionize care for people with valve disease.

About 250,000 patients worldwide have surgery to replace heart parts each year, Dr. Mayer said.

In one of Dr. Mayer’s experiments, heart valves fashioned from stem cells harvested from sheep bone marrow appeared to function normally when implanted in sheep. A similar experiment used cells harvested from sheep arteries.

Dr. Hoerstrup said amniotic fluid was potentially a richer source of stem cells than other sources. Dr. Mayer said the big question was whether stem cells from amniotic fluid could create valves superior to those made from other cell types.

“I’m pretty sure the ball will continue to be advanced down the field,” he said. “We’ll get there one way or the other.”

Please donate now in Baby Diva’s honor to support work like this! Remember, just in case you want more incentive, if you donate just $2 or more and let us know, you will also be entered in the Mamanista! contest!!!

The hardest thing I’ve ever done

The hardest thing I’ve ever done is to hand my baby over to the surgeons so they could operate and save her life.


Did you know heart defects are among the most common birth defects–approximately 40,000 babies (1-2%) in the United States are born each year with a heart defect–and they are the leading cause of defect-related infant death?

And yet, there is comparatively little funding going into researching the causes of these heart defects and treatment options.

What amazes me most, is that some of the heart defects that do require surgery can be healed with just one operation.

Just one surgery and a child goes from a death sentence to a good chance to live a normal life.

Baby Diva’s cardiologist uses his own vacation time to identify good candidates throughout the world for these surgeries and then locates the funding to bring them to the United States for the operation.

The hardest thing I ever did was hand her over, but I did so knowing the operation has a 95% success rate and could give her a chance at a full life.

Without surgery, depending on the exact pathology, tetralogy of fallot has a mortality of 30% of patients by age 2 years to 50% by age 6 years, 80% by age 10 years, and 95% by age 20…and those statistics are for the more straightforward cases.

Thanks to dedicated and talented researchers and surgeons, I did not have to do something far more difficult–something no parent should have to do. Thanks to this operation, I did not have to hand my little baby over to be buried.

More research is needed, though. Some heart defects are caused by Fetal Alcohol Syndrome (FAS) or known genetic conditions, such as partial deletion of a chromosome. Others, like Baby Diva’s defect has no known cause.

Some cases, like Baby Diva, will need a follow up operation to replace a valve. Great strides are being made that may mean this follow up will be a less invasive procedure, rather than another open heart surgery. Some research even suggests we will be able to create a valve from the baby’s own cells, which will grow

Some fatal conditions do not have the same high operation success rates.

Some babies will never get an operation and will never reach their first birthday.

So, please donate to the American Heart Association in honor of Baby Diva so we can prevent, repair, and heal heart defects. Oh, and you can also win cool stuff by telling people about Congenital Heart Defects.

Always in My Heart

After a long labor that came perilously close to a desperate, emergency c-section, my perfect little one entered the world.

She had ten fingers, ten toes, and, despite the nurse’s warning that after such an exhausting birth she might not be ready to nurse, a voracious hunger.

They placed her on my chest and she was still the exact temperature of my body. I could feel her need for me surging through her tiny body, along with the beating of her small heart.

She looked exactly how I had imagined her: pink, unblemished skin; smooth, even features; and wise eyes that whispered truths only a newborn can share.

Over the next few hours, as I bonded with my perfect baby, the doctors came to me with forced cheerfulness. A murmur, they explained, but no need to be concerned. Most likely it will be gone tomorrow. Still there, they apologized, but probably just a small hole that will close on its own.

My husband had not yet arrived on leave from Iraq and I turned to my mother, But she looks so perfect, I said. She is perfect, my mom replied.

Of course, my mother is always right.

What follows is, perhaps, a story for another time. The short version involves a long drive to San Antonio on a hot August night and a longer drive back, heavy with a name: Tetralogy of Fallot, in another time or place, a death sentence, but in this country in this era, a cause for great hope. It includes months of struggling to keep a colicky baby calm, battling with pediatricians, and praying for the survival of both of the loves of my life. Drawing to a climax with an open heart operation in her third month of life and denouement of the joyous reunion of our, now whole, little family…with the cliffhanger of a removed valve and a likely future operation.

This week’s Crazy Hip Blog Mamas carnival asks us to share the charitable cause dearest to my heart, a phrase I take quite literally.

Because Baby Diva was born with Tetralogy of Fallot, I first and foremost support the efforts of the American Heart Association. Heart Defects are one of the most common birth defects and are the leading cause of birth defect-related deaths and heart disease is the leading killer of women in the United States. Yet, comparatively little money is put into researching the causes and treatments.

Although it is a much smaller organization, I would be remiss in not telling you a little more about For Hearts and Souls. This non-profit was started by one of the people who literally saved Baby Diva’s life, her cardiologist, Dr. Milhoan, a talented physician and a generous soul. As part of his work with the Air Force, he has screened Iraqi children for congenital heart defects and helped ensure those who would benefit from surgery got this life-saving treatment. He and his wife have started an amazing charity that helps children in communities all over the world. Dr. Milhoan uses his own vacation time to care for children at AIDS orphanages he has established and screens children for heart defects in Mongolia, Kosovo, and Mexico.

Baby Diva donated a portion of her gift money last year to these two charities.

Plain Jane Mom also responded to a Meme about the “Charities that matter to me…” and when I commented, told me to consider myself tagged. She already listed two of my top ones (Make a Wish and Ronald McDonald), which is wonderful because it leaves me free to list more. It is still so hard to choose just five! I cheated a little and blogged about one more charity on Mamanista!

The rules are simple, copy the list of charities and links (grab it from whomever tags you) and add your 5 favorite charities or non-profit organizations to the end (link to their sites with anchor text of the causes they champion). Of course finish things off by tagging 5 other webmasters/bloggers and then publishing the post or the webpage.

So here’s my list of charities:

  1. The American Heart Association: research to understand and heal hearts
  2. For Hearts and Souls: a chance at life for children in impoverished communities
  3. Sew Much Comfort: customized clothing for injured heroes
  4. Children of Fallen Soldiers Relief Fund: provide for the child of a fallen hero
  5. Doctors Without Borders: delivers emergency medical aid to those in direst need

And here’s the original list:

  1. LDS Humanitarian Services – donate to charity
  2. American Red Cross – emergency response
  3. Wasatch Homeless Health Care Incorporated/4th Street Clinic – health care for the homeless
  4. Newborns in Need – knitting for preemies
  5. Habitat for Humanity
  6. American Red Cross – disaster relief
  7. Raleigh Rescue Mission – homeless raleigh
  8. SOS Children’s Villages – sponsor a child
  9. Samaritan’s Purse – emergency relief programs
  10. St. Jude Children’s Hospital – cancer research
  11. The Elizabeth Glaser Pediatric AIDS Foundation – children with AIDS
  12. Make a Wish Foundation – grant a child’s wish
  13. Save the Children – children in poverty
  14. Ronald McDonald House – helping sick children and families
  15. Toys for Tots – toys for all kids

And I tag:

  1. PHAT Mommy
  2. Daddy Forever (I know you are probably Meme’d out, but I though you might want toget tagged on this one)
  3. Momomax
  4. Girl’s Gone Child
  5. Homefront Six

Whole Heartedly

We just got back from Baby Diva’s cardiology appointment. I always feel a little down, even though I am continually amazed and grateful that the operation was developed to heal her heart and we live in a country where such technology is widely available.

She fills me with such joy every single day!

Before Baby Diva’s operation, her condition was always on my mind. Now, I may not think about it until I am changing her top and her scar flashes me a reminder.

Her appointments, however, force me to confront it again. I am reminded that she still has no pulmonary valve and will most likely eventually need one. At this appointment, we had a different member of the team. Her regularly cardiologist is just an incredibly optimistic man. While I appreciate his skill and his amazing bedside manner, I sometimes feel blindsided when I encounter the “realists.” The ones that feel compelled to mention that “there’s always a risk, even if it is 1%.”

At this appointment, we learned that she has a small hole in her heart–left intentionally and one that is present in 5% of “normal” heart healthy adults. We also got good news–there has been no further narrowing in her arteries and all signs point to a favorable outcome.

However, I also learned that the “indicators” they use do not correspond as well as they would like to the outcomes they are trying to predict. What this essentially means is that even kids who are “looking good” can experience problems the medical field is not yet able to explain.

Also on my mind is the thousands of kids the world over who do not have access to top surgeons, or even clean, well-stocked hospitals or regular check-ups.

Baby Diva’s defect, Tetralogy of Fallot, is a certain killer if left untreated…only a handful will make it beyond age 2, with most dying in the first year of life. but the surgery has a 95% success rate and most total repairs give their recipients a chance at a long, normal life.

One operation is often all it takes to bring a baby’s chance from near zero to near one hundred percent. Amazing.

Baby Diva’s regular cardiologist has his own charity and works with a number of non-profits, as well as the US military, to identify candidates for surgery in other countries and bring them back to the US for operations. Thank the Lord for people like him!

More research is needed, though, both for Tetralogy of Fallot and other congenital heart defects and the techniques and medicine that can bring hope to families.

More research so we better understand the causes of these defects, know the optimal age for repair, and so repairs can be less intrusive, safer, and more effective.

*sigh*

I just had to get that all out.

Last night I made a Squidoo lens about Congenital Heart Defects, and I will add any money made from the lens to my yearly donation to the American Heart Association. When we get settled I plan on looking into how else I can help raise money for heart-related research.

I was also thinking in the car ride home that I would like to start a blogroll for anyone who writes (even if it is just a small part of your blog) about a their own or a loved one’s heart defect. Blogs were so helpful for me when we were getting ready for Baby Diva’s operation.

If anyone out there who is interested sees this, let me know if you are interested. Just e-mail me your link (mamaluxe at gmail dot com) or leave your e-mail and link in the comments and I will get back to you.