Tag Archive for Heart Defect

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?

Life Line or Pipe Dream?

Parenting involves tough decisions, and here’s one:

Should we bank our son’s cord blood?

Our daughter has a congenital heart defect (Tetralogy of Fallot) and received an open heart surgery repair when she was three months’ old. She’s doing great, but will eventually need a valve. Some recent studies and trials show that it may be possible to grow a transplant valve from stem cells that would grow with the recipient–in fact, researchers have grown a heart valve from bone marrow cells.

At the end, I’ll explain why I hope you’ll consider donating cord blood if you are expecting a baby soon.

But this post is about our decision about whether or not to use a private bank to store our son’s cord blood.

Here’s where it gets complicated.

I was pulling my hair out weighing the options with little information, pouring through academic papers that were way out of my field. Finally, I found this really helpful article about whether or not to bank cord blood, that gave me some more information so I could make up my mind.

Will the technology work?
This, of course, is just speculation. Who knows what they will be using ten or twenty years from now. So, no real answers there. If your child has a disease that is currently treatable with cord blood, you can apply for Sibling Donor Programs that will cover the costs for you. Since this is still experimental for heart valves, our daughter would not qualify–but it is good to know about these programs other parents are able to use.

If they do build a transplant valve, will it be more likely that they will use her bone marrow cells or cells from cord blood?

Hard to say. In many children currently being treated with stem cells, their own cells contain the genetic markers for the disease and is therefore unusable. However, that is not an issue when growing a replacement valve. Therefore, our daughter’s bone marrow would provide an exact genetic match without the issues involved in treating children with other diseases. Also, a single cord blood unit often does not contain enough cells to treat the patient. If my daughter is ultimately treated with cord blood, there is a possibility the surgeons will need multiple units, anyway.

Are we more likely to find a match from her brother’s cord blood or from a public bank?

If we do use cord blood at some point for her, it seems likely we would have to turn to a public bank. Although the chances of finding tissue matches among family is higher than finding tissue matches in a group of strangers, the odds are only 25% that any one sibling is a tissue match. On the other hand, it appears that the numbers game changes the odds. If thousands of samples are available in public banks, the odds are much better that one of these will be a match than the blood banked from one sibling. And, as I mentioned above, many treatments require multiple units anyway.

When will she need it?

We’ve gotten different answers from different doctors. Some say in her early teens, while others believe she will be able to wait until her early 20s. This matters, because we’re not sure about the length of storage possible for cord blood. Some studies suggest it may last up to fifteen years or more…or it may not. So, even assuming we bank her brother’s blood and it is a match and the technology is there and it is enough to grow her a valve, the blood may no longer be usable when we need it.

So, what does this all mean?

To bank privately or not is a hard decision. I would spend any amount of money to give my daughter the best shot at a healthy life. Many patients with valve replacements live long, full lives. At the same time, it seems foolish to throw thousands of dollars at a pipe dream–money that could be spent giving her and her brother other opportunities.

Current transplant valve materials all have issues and all require replacement approximately every 15-20 years. Heart surgery is growing by leaps and bounds, however, and it is entirely possible that a valve grown from stem cells (or made out of another material, like the super-elastic, shape-memory metal alloy called “thin film nitinol”) may be a real option for my daughter.

So, that doesn’t let any of us off the hook!!! Please donate cord blood!

Public banks of cord blood will be the source of stem cells for many potentially life-saving treatments for leukemia, lymphoma, sickle-cell anemia, immune deficiency diseases, aplastic anemia, thalassemia and probably more in the future. If you give birth at a qualifying hospital, without any charge you can donate cord blood, which contains stem cells that may save a child’s life.

Mama Called the Doctor and the Doctor Said…

Since her operation, my daughter has had an increasing fear of doctors, not that I blame her. Doctor visit phobias are fairly common in children, and she certainly comes by it honestly.

And perhaps it is hereditary as well, along with her unusually strong legs. When I was a child, two nurses and my mother had to hold me down for shots and I still managed to kick the stool and send it flying across the room at the pediatrician.

Last time we visited my daughter’s cardiologist, he said he needed a clear picture from the echocardiogram. If we could not keep her calm, they would have to sedate her.

So, since our last appointment, we’ve been reading about doctor’s visits and practicing with our doctor puppet and kit to alleviate doctor fears.

When I called up to schedule, the doctor told me to make an 8am appointment and to give nothing but clear liquids.

Of course, this makes total sense in case she needs sedation, but I was concerned that it also makes sedation more likely. Two year old, plus no food, plus doctor’s office, equals cranky.

When we arrived, they said, “We need to get you registered.” But…we’re already registered. “Okay, let me call registration.”

Apparently, one supervisor was on vacation and the other was in another building so the woman at the desk just disappeared.

Over the course of the next hour and fifteen minutes, the waiting room filled with other patients who also either needed to be registered or have their information sent over to the office.

And, of course, my daughter started to grow hungrier, and more impatient. She was so very good, coloring, reading, playing, but I could see her attention span growing shorter, and I knew what was coming. My daughter is sweet as molasses 95% of the time, but her tantrums go from 0 to 60 in a millisecond and, once we’ve reached the edge, there is no turning back.

FINALLY, we go into the room. I convinced them to delay taking vitals so we would be fresh, but the hour wait had already sabotaged that. The doctor made a remark that if I was concerned about the vitals, he thought that sedation would need to happen. I think the doctor believe sedation to be a foregone conclusion.

The technician points to the television, “Who is that?” Unfortunately, my daughter doesn’t know big bird from, well, a big, scary, yellow bird. At that moment, I start to see the advantages of introducing television earlier.

We get her up on the examination table with her pillow, Cat-Cat, and Yorick the Duck (my husband named him). For some reason, she kept wanting to grab her legs. Finally, we figured out that we had told her she would be lying down, just like a diaper change. So, she was holding her legs up in the air, like she does for a diaper change.

Two year olds are logical, we’re the ones who don’t make sense.

She was a little calmer, but still cried when the technician touched her with the “tickle wand.” Maybe, I asked, I could give her just a little banana?

Uh-oh, bad question. The technician looked nervous and got up to ask the doctor.

The situation was getting desparate, so I climbed up on the table (35 weeks pregnant) and held her. I asked my mom to call the technician back in.

We were so close, and yet not quite there.

Finally, the technician asked, “What colors do you see?”

Baby answered, in a voice approaching awe, “Blue and orange.”

“Good job!”

“Good job,” baby repeated.

“You’re making those colors,” the technician told her.

Bless her.

From there, it was a quick snack and smooth sailing through another hour and a half of tests.

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.

Kindermusik Day

Yesterday was Kindermusik day. Actually, last Friday was Kindermusik day but we were under tornado and flash flood warnings so we made up our class yesterday.

I have so much fun at Kindermusik–I’m not sure if it is more of a treat for Baby Diva or for me.

With Baby Diva’s heart defect, we had to take extra precautions so we did not get out much in the beginning. Now I am just desperate to do something fun during the day and also to give Baby Diva a chance to play with other babies and adults. Most of the other women I know with young babies have moved away, one of the perils of the military life. Playgroups in the area are either closed to new members and/or they are for ages 18 months and up. I’d start one of my own, but we are moving soon.

So, for the next couple of months Kindermusik fits the bill for us perfectly.

We get music, movement, and social interaction. Baby Diva loves it so much she was fine pushing back her normal morning nap about an hour. She was cooing and giggling up in the car and right up until I put her down for the nap, at which she promptly passed out without protest.
Baby Diva even allowed someone else to hold her and walk her six feet away from me! We mommies switched babies and Baby Diva had a ball with someone else swinging her around.

I don’t know whether to celebrate or to cry. Actually, wait, no… I do. Celebrate. Definitely celebrate.

Party Girl

I know a baby, her name is Party, Party Baby…

Because Baby Diva had a heart condition, because she never really liked a bottle, because we are moving soon, because we live far away from family and life-long friends…for so many reasons…we never got her a sitter here.

For the most part, I had avoided formal occasions. Before her surgery, I had to avoid crowds in general, anyway. Now that Super Dad is back from making the world safe for democracy, though, there are tons of Formal Balls and other parties.

Baby Diva had full dance card last week.

First, an all-ranks Military Ball:

Then she went to a rehearsal dinner:

Then she went to a wedding and saw her Daddy lead a saber arch:

Baby Diva Debuts

Baby Diva knows how to make an entrance.

Warning: If you have never given birth before, you may want to skip this post.

At 2:30 am on the 8th, I awoke, feeling “kinda funny.” Then I felt “kinda wet.” Then I felt REALLY WET.

A week ago, I had found out Baby Diva was in the transverse lie position…meaning she was across my uterus instead of head down, or even butt down. Laboring in that position is unsafe, and having your water break in that position is downright dangerous, so I had an appointment to attempt to turn Baby Diva the following day.

Obviously I was never going to make that appointment.

Super Dad was still on his way home for leave from the Sandbox (Iraq) and my mom was not due in from New York for about 12 hours. So, my friend graciously picked me up at 2:30 am on the 8th.

Three doctors consulted because they were not sure if Baby Diva was still transverse or not. Meanwhile, a nurse tried to get an IV in me and I refused. I wanted a hep lock. She kept saying–but when you have a c-section…I kept saying, but that is not certain yet.

Finally, they decided Baby Diva was a little twisted, but head down enough to proceed.

They allowed me to labor for about 8 hours but I was not making any progress at all–in fact I went backwards. With the water broken they urged pictocin. They put it all the way up and I handled it for about 2 hrs. I tried to play my hypnobirthing tapes but they kept interrupting any relaxation I was able to achieve. When they said it was going to still be a long while, I went for the epidural.

My mom was delayed at the airport–she was due in that day at noon! She arrived just as they were prepping me for the epidural.

Then we started to make progress…but I developed an infection, and the contractions stopped really working. With the epidural wearing off and pushing past the 24 hour mark, I still managed to get her out. I told the midwife there was no way I was having a c-section after 24 hours of labor!!! (OF course if it had been life or death I would have–but other than that I was determined.)

Baby Diva was born on August 9, 2:38 am, and was 7 lbs, 2 oz, 19.5 in. I have never felt so perfectly warm and wonderful as when they placed her on my chest.

Over the next two days, the doctors came to me with increasingly worrisome reports about Baby Diva having a heart murmur. Finally, they decided to transfer her to San Antonio…but at the last minute decided it would be safe for me and my mother to drive her down so I could continue to breastfeed her along the way.

At San Antonio we discovered that she has a condition known as Tetralogy of Fallot, which will require surgery sometime between 3-6 mos. Later is better as she will be stronger.

In the meantime, Lilah is behaving like any newborn–I just have to keep her extra calm and take exra germ precautions.

Some of the scariest words I have heard now include:

“And she will require open-heart surgery.”

“Try your best to keep her calm. If she cries, she may turn blue.”

“Here is the 24 hour pager for when she turns blue.”

Super Dad was able to hear Baby Diva’s first cries on the phone and arrived back home for leave the day after our San Antonio trip.