Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Happy Belated Birthday to Baby Sprout

Dear Charlotte,

Nine years ago, Baby Sprout made an early entrance into this world on the morning after Mother’s Day. We knew a lot about you that morning–that you’d be rushed to Children’s Memorial Hospital and that  have open heart surgery. There was so much more that we didn’t know, starting with whether Sprout was a boy or a girl. Mostly, we didn’t know what we didn’t know. We’re quick studies, however, and we still refer to ourselves as The PITS (Parents-in-Training) to acknowledge how much we have to learn.

DSCN0656 DSCN0627

While what we still don’t know about parenting may be legion, what we know about you could fill reams of paper (and has, virtually speaking). You survived that first surgery and has had best-case health outcomes for nine years. As you complete your first decade we know that you are a smart, funny, sensitive (in good and bad ways), generous, kind child. You are quick to laugh, though also quick to cry. You have  a lovely disposition, though you can also have a terrible temper.  You love to read, play piano, horseback ride, color, and play with your friends. You are imaginative and creative.

Your deep grief at the death of our beloved cat Esther has touched me–to know that you love and grieve with such ardor is at the same time difficult (because I cannot help you through the pain) and heart-warming (because you are such a passionate soul).

You have become increasingly self-conscious of you scar and yet, at the same time, quite proud of it. This somehow seems to me an indication of the fine, thoughtful young woman I am sure you will become–conscious of the world around you, aware of your own strengths, and concerned about your limitations.

And what, above all else, have you done to make us proud lately?  You asked that in lieu of birthday gifts, anyone attending your party make a donation to the 2014 Move for the Kids in honor of “her hospital,” the Ann & Robert H. Lurie Children’s Hospital of Chicago.  [No, folks, I don’t make this stuff up. (Okay, she also wanted “fairy stuff or Monster High stuff” and “can cousin Brandi come to my party?’]

signature-tile

Click the image to support Team Charlotte!

My poetry muse seems to have gone fishing this birthday and I’ve only gotten as far as “nine is fine.” And I’m sure it will be.  Darling Sprout, my sweet princess–may you grow from strength to strength.

And to Team Charlotte and my dear readers, As I feel I must do each year at this time, I thank you all for being with us on this journey, and for reading along whether I write daily or sporadically. Charlotte’s journey has been incredible so far, and we are privileged to be along for her ride. We’re even more privileged to know that her story has helped and inspired others, and connected us with families and parents who have similar paths to walk.

Thank you for sharing it  all with us.

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Raising Awareness and Fighting Congenital Heart Defects

Cropped Heart

Charlotte’s Mended Heart (10/25/2013) photo credit: Dr. Jeffrey Gossett

(Full disclosure: This is a re-post of last year’s Congenital Heart Defect Awareness post except when noted by **)

In January 2005, our world was rocked and we thought it might come to an end. That was when Dr. Rudy Sabbagha informed us that our unborn child had a congenital heart defect. He was pretty sure that the specific defect was tetralogy of Fallot (*That’s what Shawn White was born with*). As my high school friend’s daughter, then 13-years-old, had survived a one-time repair for that defect and was thriving, I was relieved.  We later learned that the defect was Truncus Arteriosus, a far less common heart defect.  We also learned that only 50% of babies are diagnosed in utero with TA, so we felt lucky, in an odd way.

Our first online searches for support and information were unsuccessful.  Eventually I gave up looking. I started this blog, putting our emails online at first and then updating as we went for prenatal visits, when Charlotte was born, and throughout her surgery.

And then people began finding me and Charlotte. The first time a family posted a comment about TA, I got chills. Over the years we’ve collected about a dozen comments from parents who have found comfort in Charlotte’s story. Some of them have their own blogs and I try to keep up. Some of them stopped writing their blogs, and I feared the worst.

Today I want to highlight two people we have met through this blog, people whose CHD stories have changed my outlook:

Francie Paul gave birth to a healthy baby boy in August 2005. Or so she and her husband Brian thought. A few hours later, Joshua began turning gray, his oxygen levels plummeted, and he was rushed to Children’s Memorial Hospital.  The doctors determined that he suffered from severe complex congenital heart disease, which is a combination of several CHDs, and at four-days old, Joshua had open heart surgery. He had another surgery at about three months, and another near his third birthday.

Francie and Brian found themselves shaken and changed. They could have retreated to their home and become insular, handling Joshua’s medical issues privately. But they did not. Instead, they asked the doctors, “What can we do for other children with CHD?” They were told that the greatest need was research funding. So they began raising funds and in 2007 founded the Saving tiny Hearts Society.  Each year, Saving tiny Hearts donates its funds to a particular research project that is chosen by the medical professionals who received the previous years funds. In that way, the medical researchers choose the most important and promising research, and the philanthropists do what they do best, raise awareness and funds.

Francie somehow found our blog and called me. She has been not only a shining example, but a steadfast friend, touching base when she knows Charlotte has a surgery or procedure. She’s a pretty intense mom and person, and I admire her tenacity and drive.

As Brian notes in the Parade interview linked below, very few 35-year-olds have severe complex congenital heart disease, and very few 45-year-olds have Truncus Arteriosus.  We don’t know what the future holds for our children. We do know that there is a chance that either Charlotte or Joshua might need a heart transplant in their twenties or thirties. (I don’t like to think about that and don’t talk or write about it very often. I keep faith in the fact that her heart suffered no damage prior to surgery and we’ve had no complications between surgery. Joshua has been similarly healthy, thank goodness.) Brian and Francie have decided to aid the future by funding promising research and I applaud them.

Jessica Renshaw Hargis: Jessica is a young woman in her mid-twenties who was born with Truncus Arteriosus. Like Joshua, she was born seemingly healthy and was rushed to the hospital when she turned blue. She had her first repair at three weeks old and her second at three years old. After that she had few complications that I know about. Jessica found us when she was about 23-years-old. She was getting ready for her third repair (a valve and conduit replacement, or what we call a “tune up”) and was just beginning to wrap her head around managing her own health care. She was, in fact, having elective surgery so that she could do it while still well-insured.  Jessica had some post-surgical complications after that surgery (in 2009), but is largely doing very well. We had the pleasure to meet her in August 2009 and it warmed my heart to see Charlotte talking to a grown woman who shares her experience. While Charlotte and Jessica are as different as can be, they share something that we can never share–the understanding of what it is to live with a mended heart. We treasure our relationship with Jessica and her mother, and the friendship they reached out to give us.

*We are never not  aware of congenital heart defects at our house, though Charlotte says that she sees her scar and it feels more like a birthmark to her.  When Charlotte complained of reflux last night and told me she had sharp pains in her chest, my first thought was “Well, we haven’t had a heart-related emergency room trip yet. I guess tonight’s the night.”  Fifteen minutes later she was sound asleep. Today she told me that she knew it was reflux and that I shouldn’t worry about her heart unless she tells me to worry.  She, in fact, has the biggest, most generous heart I know.*

*Please consider linking to Saving tiny Hearts Society and making a donation in honor of the 2 to 3 out of every 1000 children born with a broken heart. Today they live and thrive because of research that groups like StHS helps fund*

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Congental Heart Defects Kill Lots of Kids, but You Can Help

Did that get your attention?

According to the Children’s Heart Foundation, congenital heart defects (CHDs) are the leading birth defect around the world. In the United States, CHDs cause more infant mortality than any other illness or defect. One in 40,000 children born in this country–this medically advanced, wealthy country–is born with a CHD.

When I check on my sleeping 8-year-old girl each night, I breathe a sigh of relief. Why? Because thousands of American babies born with CHDs don’t make it to their first birthday, let alone to their eighth.

Each time we go to the cardiologist, I hold my breath. Why? Because thousands of children like Charlotte don’t make it to adulthood. Or if they do, they suffer developmental disorders and other complications, some of which are avoidable.

Cropped Heart

October 2012

We are the lucky ones. Charlotte was diagnosed in utero. As a result, she was transferred within 13 hours to then-named Children’s Memorial Hospital where, a week later, she underwent life-saving open heart surgery. She spent 49 days in the PICU. I have some traumatic memory blockage, but there were bumps in the road and times when we weren’t sure she’d come home to us. Again, we are the lucky ones. Because her heart suffered minimal muscle damage and because she had the least complicated possible version of Truncus Arteriosus, she has had best-case outcomes. She is healthy and happy.

 My cousin Lynn is a lucky one, too. A little more than 50 years ago, she was born with tetralogy of Fallot. If I have my facts straight, she was not diagnosed until she was nearly a year old. Her parents took her to Texas Children’s Hospital where she was the 11th child to undergo total repair. She is the mother of two college-age girls and a hero of mine for other reasons.

I could name a half a dozen other lucky ones. But, today I want to talk about what it takes for ALL CHD children to become lucky ones.

In utero detection isn’t always possible (depends on the kind of sonogram, technician skill, etc). And in utero detection is costly.

But, there is an inexpensive test that can detect  a heart problem on a newborn before they even leave the delivery room. It costs around $15, is non-invasive, and causes no pain or trauma. A simple pulse oximeter test–a bandaid-type wrap around a finger that can measure the saturation of oxygen in the bloodstream. Low blood oxygen indicates problems and leads to diagnosis.

Every child in every state has a hearing screening before he or she goes home from the hospital. Why not a pulse oximeter test?  There are 8 states where no legislation has mandated this test and two states where such legislation has failed. I’m happy to report that Illinois passed this legislation in September 2013. Thank goodness we knew about Charlotte’s heart–she would not have been routinely screened in 2005.

I urge you to read more, educate yourself, and advocate for the health of all the children in your state.

Think this isn’t your problem? Think about these facts, from the Children’s Heart Foundation:

Lifelong Disease

  • Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • For the first time, more than 50% of the CHD survivors are adults.
  • 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

  • 91,000 life years are lost each year in this country due to congenital heart defects.

  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

 

While new studies show that the number of infant and child deaths caused by congenital heart defects is falling, these deaths still account for 30-50% of  all infant mortality caused by birth defects. It is the leading cause of infant and childhood death. And those deaths can, many of them, be prevented.

Truncus and repair from ufhealth.org

Charlotte’s heart looked like the one on the right when she was born. Now it looks closer to the one on the left. Shouldn’t every child have that chance?


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Give Kids a Hand Update

Chicago Lurie Stacked Squares

Chicago Lurie Stacked Squares (Photo credit: Atelier Teee)

About a year and half ago, I asked friends, family, blog readers, and Facebook pals to donate to Lurie Children’s Hospital’s Give Kids a Hand Campaign. As a lead up to the opening of the new hospital, the campaign offered the opportunity to put our mark on the hospital–with a $1,000 team gift, we had the opportunity to have Charlotte’s name on a tile that would be part of a mosaic mural, created in partnership with Project S.N.A.P, to be installed in the south entrance to the hospital. It was one in a series of fundraisers that made participation in the hospital’s growth accessible to people of a variety of means. And, it let families get involved by creating the art for each tile.

The result is a crowning achievement, installed on the hospital’s first birthday. It adorns the south entrance of the hospital and is a tangible reminder that this building was built by the community, for the community.

My goal was to get a tile for Team Charlotte–you wonderful group of Charlotte supporters who have read, watched, and cheered through her medical travails and her ongoing journey to regular kid-dom.  You ou did yourselves and we raised more than $7,500. Now, I wish that entitled us to 7 tiles, but since we only had one “team,” we get one tile. And here it is (the small image in the top left is the entire mosaic, the one with Charlotte’s name is her tile.):

Give Kids a Hand Tile

Want to get a closer look? Click here. Then enter my first and last name and choose “Lurie Children’s Donors” from the drop down. Or, visit the hospital.

Next week, to wish Lurie Children’s Hospital a “happy birthday,” there will be a viewing party, complete with tours of the hospital, on Thursday.

One of my revelations upon settling back in to Chicago is that everyone here is “two degrees from Children’s.”  In other words, everyone has a closer to connection to  Lurie Children’s than most of us actually have to Kevin Bacon. I meet at least three people each week who have  a story to tell, whether it is their own, their child’s, their mother’s (really), their neighbor’s, cousin’s, or friend’s–they range from the banker to the flight attendant to work colleagues  to parents at the Lycée to random acquaintances at all kinds of places and events. The connections are as common as stitches, fractures, ear tubes, allergies, and tonsillectomies. And, they are as rare as stroke, pediatric rheumatoid arthritis, brain tumors, heart defects, and sleep disorders.

It doesn’t matter how routine or rare a child’s medical needs are–to that child’s family the medical need is important and sometimes frightening.  As I often say, whether they giving your child anesthesia for a tonsillectomy or heart surgery, when someone wheels your baby away and puts them to sleep, it’s scary and it’s big.

The doctors and staff at Lurie Children’s Hospital know that. They’ve known it since Julia Foster Porter founded the Maurice Porter Memorial Hospital in 1882 to honor the memory of her 13 year old son. On the anniversary of the hospital’s 21st century evolution, I thank you all from the bottom of my heart for supporting Charlotte and the doctors that continue to keep her healthy. Truth is, she’ll never be completely regular, whatever that is, but to us she’ll always be as extraordinary as Mrs. Porter’s inimitable legacy.

Maurice Porter Memorial


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Raising Awareness and Fighting Congenital Heart Defects

chdweek_banner

In January 2005, our world was rocked and we thought it might come to an end. That was when Dr. Rudy Sabbagha informed us that our unborn child had a congenital heart defect. He was pretty sure that the specific defect was tetralogy of Fallot. As my high school friend’s daughter, then 13-years-old, had survived a one-time repair for that defect and was thriving, I was relieved.  We later learned that the defect was Truncus Arteriosus, a far less common heart defect.  We also learned that only 50% of babies are diagnosed in utero with TA, so we felt lucky, in an odd way.

Our first online searches for support and information were unsuccessful.  Eventually I gave up looking. I started this blog, putting our emails online at first and then updating as we went for prenatal visits, when Charlotte was born, and throughout her surgery.

And then people began finding me and Charlotte. The first time a family posted a comment about TA, I got chills. Over the years we’ve collected about a dozen comments from parents who have found comfort in Charlotte’s story. Some of them have their own blogs and I try to keep up. Some of them stopped writing their blogs, and I feared the worst.

Today I want to highlight two people we have met through this blog, people whose CHD stories have changed my outlook:

Francie Paul gave birth to a healthy baby boy in August 2005. Or so she and her husband Brian thought. A few hours later, Joshua began turning gray, his oxygen levels plummeted, and he was rushed to Children’s Memorial Hospital.  The doctors determined that he suffered from severe complex congenital heart disease, which is a combination of several CHDs, and at four-days old, Joshua had open heart surgery. He had another surgery at about three months, and another near his third birthday.

Francie and Brian found themselves shaken and changed. They could have retreated to their home and become insular, handling Joshua’s medical issues privately. But they did not. Instead, they asked the doctors, “What can we do for other children with CHD?” They were told that the greatest need was research funding. So they began raising funds and in 2007 founded the Saving Tiny Hearts Society.  Each year, Saving Tiny Hearts donates its funds to a particular research project that is chosen by the medical professionals who received the previous years funds. In that way, the medical researchers choose the most important and promising research, and the philanthropists do what they do best, raise awareness and funds.

Francie somehow found our blog and called me. She has been not only a shining example, but a steadfast friend, touching base when she knows Charlotte has a surgery or procedure. She’s a pretty intense mom and person, and I admire her tenacity and drive.

As Brian notes in the Parade interview linked below, very few 35-year-olds have severe complex congenital heart disease, and very few 45-year-olds have Truncus Arteriosus.  We don’t know what the future holds for our children. We do know that there is a chance that either Charlotte or Joshua might need a heart transplant in their twenties or thirties. (I don’t like to think about that and don’t talk or write about it very often. I keep faith in the fact that her heart suffered no damage prior to surgery and we’ve had no complications between surgery. Joshua has been similarly healthy, thank goodness.) Brian and Francie have decided to aid the future by funding promising research and I applaud them.

Jessica Renshaw Harris: Jessica is a young woman in her mid-twenties who was born with Truncus Arteriosus. Like Joshua, she was born seemingly healthy and was rushed to the hospital when she turned blue. She had her first repair at three weeks old and her second at three years old. After that she had few complications that I know about. Jessica found us when she was about 23-years-old. She was getting ready for her third repair (a valve and conduit replacement, or what we call a “tune up”) and was just beginning to wrap her head around managing her own health care. She was, in fact, having elective surgery so that she could do it while still well-insured.  Jessica had some post-surgical complications after that surgery (in 2009), but is largely doing very well. We had the pleasure to meet her in August 2009 and it warmed my heart to see Charlotte talking to a grown woman who shares her experience. While Charlotte and Jessica are as different as can be, they share something that we can never share–the understanding of what it is to live with a mended heart. We treasure our relationship with Jessica and her mother, and the friendship they reached out to give us.

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Cardiology–continued update

First, thank you, dear readers, for your emails and phone calls. Like the cardiology checkups, the blog evolved over the past few years into a different sort of communication, like an online scrapbook. When we were jolted back into the role of active “heart parents,” Charlotte’s journey took a new turn and the blog has been, I suppose, returned to its original purpose.

Charlotte will be fitted tomorrow with a Holter monitor. This is a tiny EKG machine that she will wear for about 24 hours. It tracks her rhythms over the course of a regular day, allowing Dr. Young to get a more detailed, more natural,picture than she can get from the five or ten minute stressful EKG in the hospital.

I don’t think Charlotte will be nearly as smiley tomorrow as she was in February, 2009. She told me today that the only thing worse than the stickers used to attach EKG leads is a strep test. She had one of those today (it was negative), so hopefully tomorrow will be easier than last week’s EKG. Especially because Philippe is taking her!

Dr. Young spoke with Dr. Jeffrey Gossett, the cardiac interventionist, today. He recommends we do a lung perfusion test as well. In case you don’t remember my March 4, 2010 post (!), here’s my answer your burning question, “What is a lung perfusion test?”

The machine looks something like an MRI. The patient has a dye injected into their blood that allows the camera to “see” the blood as it flows through the veins. For Dr. Young this replicates by camera what the Doeppler does via soundwaves, with the added bonus of guaranteeing that she can see everything she needs to. The test takes about 45 minutes, during which time the patient needs to lie still.

When Charlotte was in junior kindergarden, she bravely held still for the IV (maybe it’s just an injection) and then lay still for the perfusion study. She had Bubba, Driving Puppy, and a movie and she was SO brave. Frankly, I think she didn’t know any better. She didn’t even complain about being hot. Look at the bright pink cheeks and turtleneck sweater and you’ll see how inappropriately I dressed her for the occasion. (But, so cute, I know.)

This time, she’s terrified of the IV or injection, though I’m not sure she really knows what one is. She doesn’t think she’ll be able to lie still. Dr. Young asked if she’d need sedation. I responded that I think she may.  Charlotte and I talked about it and now…well, now Charlotte is going to add “sedation” to her new word log for English. (Along with “traumatize,” but that’s another story for another day. Really.)

After the lung perfusion (on another day),  Dr. Gossett will do the cardiac catheterization “to assess her hemodynamics and see if there is any intervention that could be provided to relieve any discrete area of obstruction should there be one.” That’s fancy talk for: we really hope that if any intervention is necessary a balloon procedure or stent will be adequate to improve any dynamics issues, and/or correct any narrowing or stenosis of the conduit or the artery.

I have every confidence in Dr. Gossett. Though he has not treated Charlotte, I met him a few years ago when I had the privilege to tour the new cardiac catheter lab that was funded by a Children’s Service Board commitment. As I said to Dr. Young today, if he can manage a bunch of giddy philanthropists as well as he did that night, he must have a wonderful bedside manner with children.

Charlotte is very scared. She doesn’t want to talk about this with her friends just yet, but we’re talking about doing a presentation to her class so that she can answer any questions all at once. (Thanks, Esther.) I have to talk to her teachers about this. Also, Charlotte is going to compile a list of questions for Dr. Gossett and then “interview” him for Charlotte’s Corner.

We had hoped not to have to think about any of this for another 5 or 6 years. I think we have been in some kind of denial about this being an ongoing condition, not a repair-and-done kind of thing. Right now, we have no idea what will happen after this flurry of tests and exams. With any luck, the catheterization will be the beginning and end of this saga for another long while.

I told Charlotte today to think of it like a tune up. She misinterpreted and started talking about it being like tuning an instrument. I suppose that works, too.


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The 365th Day: A Cardiology Update

 

For 365 days a year, Charlotte is a regular kid. Her doctors’ appointments are the same as your kids’ appointments–check up, dentist, eye doctor, occasional sick visit for the dreaded strep test or ear infection.

Then there is the three-hundred and sixty-fifth day, the day we go to the cardiologist.  For the past several years,  Charlotte’s cardiology appointment in Chicago has been rather like a social call. She gets the EKG (screaming all the while because of the stickers needed to attach the leads to her chest and arms), watches a movie during the echo, and the doctor tells us it is all good. In Boston, there was no television and the doctor didn’t read the echo while we waited. Otherwise it was the same.

Charlotte takes charge of her blood pressure measurement.

On Thursday, we visited Dr. Young, Charlotte’s cardiologist since I was five months pregnant. Charlotte was excited because she got to visit the new Ann and Robert H. Lurie Children’s Hospital for the first time and we had arranged a VIP  tour for her after the appointment. I was looking forward to visiting with Dr. Young.

Everything went as it usually does, though I have to say that the iPad did mitigate the EKG screams. Then Dr. Young came in, gave us both hugs, and sat down to tell me what she saw in the echo.  There’s no way to be gentle about this or ease you into it, so I’m just going to rip off the bandaid, as it were:

The echo showed decreased velocity in the right pulmonary artery. This could mean stenosis in the conduit or in the pulmonary branch. When Philippe and I later read the echo report, we also noticed that several indicators could not be imaged that day.  Dr. Young is concerned that the conduit is coming to the end of its life or that Charlotte has narrowing of the pulmonary artery. That same morning, Charlotte complained of pressure on her chest.

We’re holding our breath right now for further tests.  The end of the conduit’s life means another surgery. We had been hopeful that the next repair wouldn’t come until adolescence so that Charlotte could have an adult-sized conduit inserted. Given that up until now she’s had few complications and best-case results, we have been skipping along with, it appears, rose-colored glasses.

Charlotte will get a holter monitor next week. This is a tiny EKG machine that she has to wear for 24 hours. It will record her heart rhythms during the active and inactive parts of the day, noting any incidents.  Due to the complaint of pressure, Dr. Young also wanted to have Charlotte wear an event monitor, a similar device worn for six weeks with a button Charlotte is supposed to push if she has any symptoms.  Since Thursday’s complaint was only the first one, I asked if we could hold off on that for now. Charlotte is very self-conscious about the monitor this time around and doesn’t want to wear it to school, so I really didn’t want to have her saddled with it for the first six weeks of her return to Chicago.

Next week, Dr. Young is going to Charlotte’s echo to Dr. Gossett, an interventionist.  Her belief is that is time for a cardiac catheterization to better visualize the conduit and arteries.  If necessary, such a procedure could also be used to balloon the conduit and possibly even stent it.  Depending on what he sees, we may need a deeper intervention.  We’ll know more about when, what, and whether we’ll be doing  soon.

————–

A few happy and interesting statistics:  Charlotte has grown 1.25 inches since her check up in June, measuring in at a stellar 52.5 inches (4′ 4.5″) and she weighs nearly 58 pounds.