Posts filed under ‘tetralogy of fallot’

Pre-Surgery Jitters

“We cannot change our memories, but we can change the meaning and the power they have over us.” –David Seamands

Yesterday Abby and I visited a place we are so very familiar with–Primary Children’s Medical Center.  We walked to these elevators on the south end of the hospital.  They look so bright and happy, with murals painted in them.  We got the one with the hot air balloons yesterday.  They also have elephants and fish in some of the other ones.  These elevators, regardless of how the paintings are meant to make you feel, bring on an actual physical reaction of dread and nausea for me.  It sounds silly, but it is true.  When Abby was three-days-old I remember sitting outside these elevators on little seats they have there.  I was holding her and waiting for all the test results to come back, which took hours.  I was watching her sleeping, beautiful face and trying to come to terms with the fact that something was wrong with her heart.  The elevators would open and there, jumping out at me was the brightly painted murals.  After receiving her diagnosis of Tetralogy of Fallot and realizing that her condition was very serious and would need open heart surgery if she were to live, I became lightheaded and nauseous.  As we left the hospital with her in my arms, and my stomach feeling queasy and unsteady, and me crying, I couldn’t understand how my life had changed so drastically in just three days.

That memory is so strong that my body actually recreates those physical sensations of nausea and lightheadedness when I ride in these elevators.  For ten years now and countless visits to this hospital for cardiology appointments, urology appointments, orthopedic surgeon visits, four surgeries, and hospital stays, every ride in these elevators has made me sick to my stomach and dizzy for the short ride up or down.

Yesterday, I wanted to be rid of the power of that memory.  After all, Abby has overcome some tremendous odds and she has been a little fighter, fighting through some touch and go days after her last surgery to be here with us.  Abby has fears, bur no memories to hold her captive.  We were going to the Pre-Surgery class our hospital holds for kids undergoing surgery.  The nurses and Child Life Specialists hold classes to help the children feel more prepared and less anxious.  Abby was extremely excited for the class, hoping it would help her feel less scared and more informed.

At first, I thought we had made a mistake in coming.  There were four children getting their tonsils out, two getting tubes in their ears, one getting cochlear implants, and one having his knee drained of infection in the Rapid Treatment Unit.  Abby leaned over and asked if she had to tell them why she was there.  I told her no, that the nurses knew but she didn’t have to tell anyone if she didn’t want to.  During a little video about the hospital visit Abby leaned over and said, “This video isn’t really for people having surgery like me is it?” She was right…it wasn’t.  It was definitely meant for children who were having surgeries, like tonsils removed or tubes or other surgeries where children leave the hospital the same day as the surgery.

I thought about asking her if she wanted to go when they began separating the children into a group and the parents into a group.  I could see she was somewhat apprehensive, and didn’t want to tell the other kids about her surgery.  Then, a nurse came and asked Abby to go with her.  She explained that since Abby’s surgery was different than the other kids she was going to work with Abby one-on-one.  I was so relieved, and really hoped that this class might help Abby after all.

After the classes, it was time to take a tour.  The nurse who worked with Abby called a special Child Life Specialist to take Abby and I on a special tour so we could get a better idea of how Abby’s hospital stay and surgery might be.  The Child Life Specialist was wonderful.  She showed us into the doors of the PICU/CICU, the floor where Abby will be moved to after her CICU stay, the playroom for patients and siblings, and all the waiting rooms where I would be waiting while Abby was in surgery.  Abby was so excited to see not one but TWO pianos so she could play if she felt up to it.

So, the class ended up being very beneficial.  Abby feels more prepared.  She met a couple of the Child Life Specialists and knows that one of them will be able to take her past the “see you later” lines that I can’t go past with her.  She will be able to have someone there, even though I can’t be, until she is happily asleep on the OR table and I promised her I would be there when she woke up!  Although the day was good, she still had a headache last night…I guess the pre-surgery class couldn’t take away ALL her anxiety.

As Abby was talking to the nurse and Child Life Specialist she made it very clear, and was very firm that she absolutely did NOT want Versed before her surgery.  The nurse explained that it would help her relax and forget.  Abby calmly explained, “I know.  I don’t want to forget anything.  I want to remember everything.”  I choked back some tears and felt that lump in my throat.  She is amazing and was sent here with not only a perfect broken heart, but one of the bravest I have seen.  She is aware of the power of memory and has chosen to harness that power.

If Abby can overcome her fears and face her memories….maybe it is time I do the same;  they have held power over me long enough.  Thank you amazing Abby!

May 18, 2010 at 4:04 pm 5 comments

A Study on the Stress of CHD Families….or You are Not Alone

I happened upon a fascinating article in the Journal of Clinical Nursing.  The article was written by Shu-Fan Lan, Pei-Fan Mu, and Kai-Sheng Hsieh.  They are MD’s or RN’s that work in the Pediatric Cardiology field.  They conducted a study in 2003 and their results of the study was printed in the journal in 2007.  The article is titled “Maternal experiences making a decision about heart surgery for their young children with congenital heart disease.”  I am not a scientist and am not a researcher for CHD or psychological issues.  I am a mother of a daughter with CHD and reading this article did two things for me…it made me say “Wow!  I’m not the only one that felt that way,” and “I bet that would help others in the same situation.”  So, I’m going to share some of their findings here and include a link to the article.  I will probably include this information in two posts over a couple days.

The study basically dealt with nine families who had children with CHD’s confirmed at birth or shortly after.  Six of the children (four boys and five girls) were diagnosed with Tetralogy of Fallot.  Three were diagnosed with ventricular septal defect and one of the babies with VSD also had transposition of the great arteries and atrial septal defect.  The study focused on the mother’s, who were the main caregivers to the CHD child, and the families.  It examined how the stress altered day-to-day activity, how stress was reduced when making care decisions for the child, and how the family relationships handled the stress.

The study found five themes dealing with the open-heart surgery itself that preoccupied the day-to-day living of families dealing with CHD.  Those five themes were understanding the surgery step by step, role pressure, constructing a caretaking ability, endeavouring to maintain family function when preparing for surgery and deliberate consideration to make a correct decision.

Understanding

The first theme of understanding the surgery step-by-step contained transitional steps.  The first transitional step towards understanding was shock over the diagnosis.  This stage is one anyone with a CHD baby has understands well.  This article noted that this stage has a wide range of feelings and not everyone has the same feelings.  Some of the emotions felt in this stage include:

*shock

*disbelief

*confusion

*anger

*disillusionment

Another important aspect of this stage is asking why.  The stress and fear is greatly increased in parents who can’t get adequate answers as the cause of the CHD.  The article stated “on asking, the lack of medical confirmation of the cause of the illness makes them feel regretful and helpless.”

The second transitional stage in the understanding the surgery stage is a dream or hope of the surgery being unnecessary.  I have been here.  I was sitting in my new pediatric cardiologists office when my baby was three days old, watching other mothers with their CHD babies, thinking, this will all go away.  After the tests are done, I will find out it is nothing and we can go home and get on with enjoying this baby.  After learning of the diagnosis, a part of me still wanted hope for that “miracle” that some people get.  A medical miracle, a miracle from God, an uexplained miracle, good luck, good karma….whatever people called it, I wanted one.  This is transitional stage two.  Emotions in this stage include:

*fear that surgery will cause the child’s death

*fear over negative after-effects of the surgery

*added frustration over lack of knowledge about CHD and potential therapies

*concern over scarring

One mother of the study commented: “In the beginning, I was struggling. I worried she might have a scar here (pointing her breast) after surgery, especially as she’s a girl. I wished there was no need of surgery. We would just wait to see if medicine could heal her.”

Lastly, the transitional stage of accepting the fact of surgery.  This stage comes to every CHD parent.  After the mourning, the shock, the disbelief, the hoping against hope, the fear…comes the realization that surgery is the treatment and only way for a possible future.  Emotions in this stage include

*a sense of relief that baby is a part of the family

*a sense of gratitude or feeling lucky that their case of CHD was not as serious or fatal as others they come to know

*an understanding that their child’s CHD is serious and the only possibility for a partial or full recover is through surgery

*a sense of relief for a plan and direction of treatment

Caregiver’s Role Pressures

The second theme investigated in the study is the extreme pressures placed on the caregivers of children with CHD.  These pressures affect the entire family, but appear more affective for the primary caregiver.  This stage includes mood-swings in the caregiver.

These mood swings happened on a day-to-day basis over the care of the child.  Realizing the frailties and precarious health condition of the CHD child caused anxiety and stress, resulting in a sense of moodiness.  The primary caregiver’s concern over the environment and affected all members of the family.  The caregiver generally focused on the CHD daily, worrying over the health and well being of the child.  This had a tendency to make the family have a hard time relaxing.  Often times this period of role strain created a sense of guilt, especially for mothers.  Mother’s often felt guilt over not being able to create a perfect child, giving their child a CHD, and guilt over the perceived neglect of other children in the family.  Apparently, and this made me feel normal, mothers carry guilt over the scar that will be left upon their child’s perfect body.  Caregiver’s also carry guilt over a feeling of responsibility.  One mother explained:   “I felt responsible so I almost didn’t sleep. During the time I looked after him, I lost 20 kilograms in 3 months.”

While the emotions of having a child with a CHD are turbulent, understanding those emotions and accepting that those emotions are normal can help.  Part II of this study will be coming soon.  The citation to the article is:

Shu-Fan, Lan, Mu Pei-Fan, and Hsieh Kai-Sheng. “Maternal experiences making a decision about heart surgery for their young children with congenital heart disease.” Journal of Clinical Nursing 16.12 (2007): 2323-2330. Academic Search Premier. EBSCO. Web. 26 Feb. 2010.

February 27, 2010 at 2:45 am 2 comments

Letter From a CHD Survivor

I look like any other girl. I like all the things the other kids like, Soccer, Basketball, tag, and video games. But I’m a little bit different than all of the kids. I’m the daughter of Nicole Wardell. I’m ten-year- old and I have Tetralogy of Fallot, a heart defect. It affects my life a whole lot. It isn’t horrible but it’s not too fun either.  If I could write a letter to all the kids in the world with CHD and their families, this is what it would say.

Dear children with CHD,

I’m Abby and I have CHD just like you. I’m sorry to say having this heart defect is not easy. It will affect your life a lot. I know you must have more trials than most of your family. In this letter you will not only find advice on how to cope with it but you will also find how I feel about it.

Are you made fun of just because you’re short? Don’t worry I deal with it too. Even though the teasing can get tiring I’m 10 years old and I can still be carried by my parents. So If  I can still be carried you can probably be carried for a long time too. It will be a thing that I miss when I finally get too big.

Do you run out of breath easily? I do. What I usually do is stop and take a rest. Your friends might think that’s weird but tell them why you need to stop and they will understand. You probably won’t like that but in the end you’ll be happy you didn’t faint on the playground.

Do you tend to stay sick longer than the other kids? You guessed it, I do too. Whatever you do, don’t worry. It’s normal because of your heart. It isn’t fun but you’ll just have to live with it.

Having this heart defect isn’t too fun, but it isn’t always bad.  My life is a lot like my friends.  I like to read books, play the piano and the guitar, listen to music, play video games, and lots of other things.  I get good grades in school and like to shop for clothes.

Doctor’s and nurses can do a lot to help us overcome our heart problems.  This summer I have an open heart surgery. I’m very scared. Even though I don’t want to have it, I have to. It will be yucky, no doubt about that but, my heart will be fixed and I won’t have to deal with lots of these problems anymore.

Those of you reading this have survived the disease or know someone with the disease. Others are not so lucky. It is very sad but too true that thousands of kids around the world lose their lives to CHD every day. So please give a helping hand to those in need. I hope you know you’re not the only one who deals with these trials.  Let’s try to deal with it together.

Your Friend,

Abby

February 12, 2010 at 11:06 pm 14 comments

Congenital Heart Defects Products That Raise Awarness, Support, or Educate

There are actually quite a few items out there in the way of congenital heart defects. Some of these products are used to raise money for research, education, sponsoring surgeries, and supplying support. Other products are there to help raise awareness while others are there to educate and inform those who live with CHD. I thought that this week was a great week to present some of those products. I hope that you’ll check some of them out, and even consider purchasing some.

This organization, Congenitalheartdefects.com  has their own publication company.  They put out some great products.  The Baby Hearts Press Store has a special running the month of February as well in honor of CHD Awareness.  If you purchase one of their books, you get a free Celtic Heart pin.  Their book titles include:

“The Heart of a Mother”

“The Heart of a Father”

Both the above books contain essays and personal narratives of what life is like having a baby with CHD.

“My Brother Needs an Operation” — Children’s book about CHD and surgery.

“The Heart’s Gift” by Jodi Davis

“Hypoplastic Left Heart Syndrom: A Handbook for Parents” — This book is out of print but can be purchased as a PDF file.

Visit the link above to go to Baby Hearts Press Store.

Congenital Heart Information Network

The Congenital Heart Information Network has some great shopping on their website as well.

They have beautiful hopeheart necklackes that are silverplated and are absolutely gorgeous.  Follow the link above to purchase one and help in the fight against CHD.

It’s My Heart has some great products that everyone is sure to enjoy!

Their products include T-Shirts, Sweatshirts, Hoodies, Onesies, Bibs, and hats.  All come in a variety of colors and styles and come in sizes from newborn to adult.  They also have Tote bags and messenger bags, ornaments, license plate covers, teddy bear, BBQ apron, mousepad, tile coasters, wall clock, keepsake box, throw pillow, mugs, ceramic travel mug, water bottles,  buttons, badges, magnets, boxer shorts, greeting cards, postcards, stickers, and bumper stickers!!!!!!!  Definitely check this website out for all your CHD shopping!!

Saving Little Hearts of Nashville, Tennessee also has some great shopping.  They have calendars featuring the photos of CHD survivors and angels.  Their 2010 calendars are currently 50% off!  They also have Maternity T-shirts, Infant and Toddler T-shirts, hoodies, sweatshirts, hats, BBQ Aprons, buttons, magnets, stickers, messenger bags, tote bags, journals, stationary cards, wall clocks, mugs, and PET Gear!  So, your dog can raise awareness too!

This book My Heart Vs. The Real World is stunning!  If you have a child, friend, family member or are a CHD survivor yourself, this book is a must have!  The author Max S. Gerber is an adult with CHD.  He is a fabulous photographer and this book is wonderful!  Please visit his site above and pick up a copy of this book for yourself.  You won’t be disappointed!

The 2004 release of the movie Something the Lord Made is exceptional.  It can be seen on HBO this month.  It is the touching story of the doctors, one white and one black, who pioneered the surgery that saved the lives of Tetralogy of Fallot babies.  These “blue babies” were generally admitted to the hospitals to die.  These doctors saved their lives.  The show is amazing and I found myself in tears of gratitude at the conclusion, seeing as they saved my daughter’s life.

I would also recommend the music of pianist and songwriter Paul Cardall.  Paul was born with Tricuspid Atresia.  He has had open heart surgery and a heart transplant recently.  His story is amazing and touching.  His courage is inspirational.  His music is flawless and beautiful and will touch your heart.  He runs a non-profit organization to help those living with CHD.

This list is certainly not all inclusive.  Many great organizations and individuals have products for CHD.  If you know of some I have forgotten…leave a comment below!!

February 11, 2010 at 9:57 pm 1 comment

Healing Broken Hearts!

February 10, 2010 at 9:12 pm Leave a comment

Melody Valve–A Medical God-send

This is Dr. James Locke.  He is a cardiologist at Boston Children’s Medical.  At this time I stand in awe of the extensive research work and clinical work this man has done in behalf of heart children.  He, and many others like him, are advancing treatment of congenital heart defects.  According to his research website, he “has developed and provided the initial descriptions of nearly a dozen new techniques in interventional cardiology.”  He was one of the iventors of the cardioseal, a device inserted through a catheter to correct ventricular septal defects, Fontan fenestration, and patent foramen ovale.  Did you miss it?  Did you miss that the cardioseal is inserted through a catheter?  For those of you who have undergone open-heart surgery you know what great news this is.  No more bypass machines, stopping the heart, cutting the chest open, swelling of the heart, drainage, pressure, compression.  Certainly a cath procedure is not without possibility of complications, however; in comparison to open heart surgery, those risks are fewer and less serious.

I recently contacted Dr. Locke when I heard about an investigational new procedure for pulmonary valve replacement.  My daughter had severe pulmonary stenosis with her  Tetralogy of Fallot.  During surgery, the only way to correct extreme high pressures in one side of the heart was to cut into the pulmonary valve, resulting in severe regurgitation through that valve.  This leads to an enlarged right ventricle, exercise intolerance, abnormal arrhythmia, and sudden death in later years if left uncorrected.   Now, ten years later, we are facing the first of her pulmonary valve replacements.  This road down pulmonary valve replacement is a road that seems long.  As Abby outgrows the valve–open heart surgery.  As the valve wears out–open heart surgery.  In essence, Abby is among the unlucky with Tetralogy of Fallot who need subsequent surgeries due to the pulmonary valve regurgitation.

In preparing for this surgery, I came across an article describing the new procedure Dr. Locke was investigating called the Melody valve.  This procedure, being tested in Europe and Canada for some time, was being tested in 30 patients here in America.

This is the catheter containing the Melody valve.  The catheter is inserted through the groin, through the blood stream and put in place with the use of cameras and the balloon (as can be seen in the picture).  This is similar to angiograms or other cath procedures.  After effective results in the 30 initial patients, the trial was enlarged to 99.  Last month, the FDA announced its approval of the Melody valve for an enlarged research group of 4,000 children.  The valve and procedure had received the European CE Mark approval and the Canadian approval before trials began here in America.

Medtronic, the company who makes the valve, announced that the valve is

“Delivered through a catheter requiring only a small incision, the Melody valve will benefit children and adults who are born with a malformation of their pulmonary valve, which is the valve between the heart and lungs. These patients often require open-heart surgery to restore effective blood flow to their lungs. Previously, the only way to repair or replace a failed pulmonary valve conduit was through additional surgeries. To date, more than 1,100 patients worldwide have received a Melody valve.

“The Melody Transcatheter Pulmonary Valve is a significant technological breakthrough and offers a reprieve for many patients with congenital heart disease – many of whom are young and will require several heart surgeries over their lifetime,” said pediatric cardiologist Dr. William E. Hellenbrand of the NewYork-Presbyterian Morgan Stanley Children’s Hospital and Columbia University Medical Center.

“The Melody valve gives patients with congenital heart disease a new, non-surgical approach to managing their disease.”

“This novel technology will improve the lives of thousands of patients in the United States,” said Dr. John Liddicoat, vice president and general manager of the Structural Heart division, part of the CardioVascular business, at Medtronic. “Medtronic is leading the development of transcatheter therapies for heart valve disease. FDA approval of the Melody Transcatheter Pulmonary Valve is evidence of that leadership.” (brown text quoted from linked website)

The Melody valve requires a short 2-4 day hospital stay after implantation, without any ICU time and patients are not faced with the discomforts and pain associated with open-heart surgery.

Dr. Locke performed the first successful American trial at Boston Children’s Hospital in 2007 on a four-year-old boy with Tetralogy of Fallot who had severe complications from H1N1, resulting in the breakdown of his valve.

This valve is more than a novel medical advance.  For those of us who face the future of pulmonary valve replacement surgery, again and again, this little conduit is a god-send.  My daughter, having her pulmonary valve replaced this summer, is not a candidate for the Melody valve this time around.  Her pulmonary valve is virtually non-existent, as they had to cut into it deeply to overcome the effects of the stenosis.  After contacting Dr. Locke, and sending him her records, he informed us that in the future, she would be a candidate for the surgery once a valve was replaced that was functioning.  So, while we missed the Melody valve this round, future replacements can be done without open-heart surgery.

Thanks to the organizations who raise money for research and funding, Dr. Locke can continue to pioneer new methods and procedures to reduce open-heart surgeries.  Thanks to all those who pioneer for my daughter and the thousands of other children like her.  You work and dedication is appreciated.

February 6, 2010 at 4:31 pm 3 comments

Stories From a Heart Surgeon

Before I was ever sucked into the world of Congenital Heart Defects, the following New York Times article would have been vaguely interesting to read but certainly not powerful and touching.  Now, after having been through one open heart surgery to repair Tetralogy of Fallot and expecting another valve replacement surgery in less than a year, this article is emotional and awe inspiring.  I don’t usually share articles in their entirety but I think this article is worth sharing.

“BODY AND MIND; Baby Heart on Hold

By JOHN STONE, M.D.; John Stone is a cardiologist at the Emory University School of Medicine; his latest book of poetry is ”Renaming the Streets.”
Published: Sunday, July 10, 1988

IF WE ARE TO BEGIN AT THE BEGINNING, it must be way back. In the yolk of time. The problem began with the embryo, the cells of which divide, burgeon, twist and unfold, yielding to the wash of DNA and the codes of its helix.

The embryo is an architect; it must invent, out of all that has gone before, the city it plans to inhabit. The work is precise and delicate; a wonder that trouble doesn’t occur more often. Virtually all creatures develop in this way. That is why the premedical student can study the stages of growth of the chick embryo and extrapolate to the human. Thus, every human embryo, passing through the gill-slit stage on its way to lungs, rehearses the moves of the chicken that has crossed this road so many times before, effortlessly, within the chalk walls of the mother shell. It is a magical act, predestination come to pass, a virtuoso performance until, in the case at hand, a little patient I’ll refer to by his last initial, L., somewhere between the third and sixth weeks of pregnancy, when it came inexplicably to grief: a million commandments all obeyed to the letter, except for the one that mattered to this child.

L. is almost 2 years old; he first came to the university clinic because a heart murmur was heard shortly after birth. Though small for his age, he is alert and bright. His condition is called tetralogy of Fallot, the most common cause of the so-called ”blue baby.” Study of his cardiac anatomy with the echocardiograph has been diagnostic for tetralogy. The sonar waves outlined two main and interconnected problems: narrowing and partial obstruction of the artery to the lungs; and a defect, a ”hole,” in the wall, or septum, that divides the right and left ventricles, a ventricular septal defect. Though the French physician Etienne Fallot, in 1888, described four problems (hence, tetralogy), these two basic defects account for L.’s blueness. Dark unoxygenated blood surges through the veins back to the heart from the body (where it has given up its oxygen); entering the right ventricle, this venous blood finds the way to the lungs partially blocked, so it takes the path of less resistance, across the septal defect into the left ventricle. There, the dark, ”blue” blood mixes with the bright red oxygenated blood headed out to the body: that is why his skin is blue, why his growth has been slow. Most alarming today, his blueness is worse.

L., says his mother, has been more listless since his last visit to the clinic three months ago: not eating as well, resting more, playing less. ”And his lips and fingers turn real dark-blue after he plays hard,” she says. I let him sit on his mother’s lap and ease my stethoscope under his shirt. He doesn’t cry; he’s a veteran at this. The loud murmur is unchanged. But his mother is right, as mothers often are: his is bluer today; his nail beds, his lips, are not simply bluish, they’re purple. As he falls quietly to sleep on his mother’s lap, I seize the opportunity to take a quick reading on the oximeter, which gauges, painlessly, the oxygenation of the blood.

The pulse oximeter is a recent technology that uses light sensors to measure the ratio of unoxygenated to oxygenated blood passing through the vessels of the finger or ear. The instrument monitors, continuously, for ”blueness,” or cyanosis. The widest use of oximetry is in the detection of possibly lethal falls in blood oxygen in patients in operating rooms and intensive-care units (where it has prevented hundreds of deaths).

The nurse slips L.’s index finger into the padded chamber; within seconds, there’s a readout of the arterial blood oxygen saturation: 73 percent. I stick my own finger in, the gadget beeps: 94 percent. The obstruction in the artery to his lungs is gradually worsening. He will definitely need surgery – and soon. I explain this to the mother, still holding him, asleep like a dusky statue in her arms. She doesn’t cry, either. She has been expecting this.

More than 25 years ago, I flew from Georgia to the Mayo Clinic in the hold of a huge military transport, one volunteered by the local Air Force base. A nurse, Alice, flew with me as we ferried a cyanotic infant, only a few weeks old, who also had tetralogy of Fallot. The boy was more seriously ill than L. – much smaller, bluer. Alice and I had rigged up, in the vaulted whale’s belly of the plane, a bassinet that swung lightly, like a cradle, from the arching ribs of the hull. The plane was too noisy for much talk, but we could see what was happening. The baby was fine, only slightly blue, as long as he slept. But when he began to cry, his marginal circulation deteriorated; he then got bluer and bluer, until, at times, he actually lost consciousness transiently because of lack of oxygen. Oxygen was being piped into his bassinet, but when he cried, either Alice or I picked him up quickly and shushed him. Twice during our trip, it was necessary to give him a small shot of morphine. The drug worked within a few seconds to calm him and put him gently back to sleep, while his color changed, by slow degrees, from blue back toward pink in a kind of living litmus test. Both Alice and I were grateful when the plane touched down at dusk on the snowy Minnesota runway and we could turn our passenger over to the staff at Mayo. Within 24 hours, the boy had had his surgery, a palliative procedure that would allow him a chance to grow, in the hope of definitive surgery later. When I last saw him, before he moved to a neighboring state, he was 5 years old, pink, sassy and growing.

Until 1944, no surgery for tetralogy was available. Then, at Johns Hopkins, Helen B. Taussig, a pediatrician, and Alfred Blalock, a surgeon, devised an ingenious approach. [This article fails to mention Dr Vivien Thomas’ contribution as well] They decided to ”bypass” the narrowed pulmonary artery, suturing a (dispensable) arm artery to the pulmonary artery just past the obstruction. Drs. Blalock and Taussig were gratified that their patient ”pinked up” immediately. For years, the Blalock-Taussig shunt (or variants) was the only help available for tetralogy; though this surgery, too, was palliative, its results were dramatic, even miraculous, when one considers that, for centuries, parents and physicians had stood helplessly by while ”blue babies” worsened and eventually died. Complete surgical correction of tetralogy required that the heart itself, sacrosanct and inviolate, be opened; this step had to await development of the heart-lung machine.

AS SURGEONS PREPARE TO PLACE L. ON a heart-lung machine now greatly refined from the first models so as to accommodate infants, his heart – the size and color of a large plum – beats within his opened chest.

First, all the blood coming back to his heart through the veins is diverted through tubing to the machine, which oxygenates, removes carbon dioxide, filters, cools or heats, and pumps the blood coming to it. (Heart-lung machines are of several types, but basically they use either a bubble oxygenator or a semipermeable membrane that mimics the functions of the lung. The blood, thus oxygenated, is cooled or heated, as necessary, then pumped back into the aorta and out to the body, simulating the function of the heart.) The pump technician announces, ”We’re on bypass.”

The child is cooled, a step that decreases metabolism and protects the brain, kidneys and other vital organs. As the temperature falls, his heart slows, then, no longer needed, is allowed to stop.

Each member of the surgical team is intent as the surgeons work through the small, brightly-lit operative field. All this technology, art and science, in the service of one small plum – which is now ready to be opened by the surgeon.

L.’s ventricular septal defect is large, the size of a dime. It is closed by a patch made of Dacron, carefully sewn at the margins into the surrounding heart muscle.

The pulmonary artery is opened and widened, using a patch made of the patient’s own pericardium (the tough sac that encloses the heart).

All the while, the drone of the pump is heard, taking in dark blood through one tube and pumping it back, bright red, to his body through another. The heart is now being sewn closed. The little patient has been on bypass just over an hour; we are ready to ”wean” him from the machine.

His temperature is raised – and, spontaneously, his heart begins to beat again.

The strength of the beat increases gradually, taking over more and more of the pumping function. He’s off bypass now, on his own, and flying. The surgeon’s eyes smile, and I know his mouth is smiling, too. The anesthesiologist doesn’t really need to look at the oximeter reading, only at the child’s lips. He looks anyway.

Now, as I see patient in the clinic three weeks later, he’s certainly not listless; he toys with the blood-pressure cuff, tries to invade a nearby garbage can. The midline incision in his breastbone is healing nicely. He seems not to notice it at all, his mother says. He’s eating well, breathing easily. His arterial saturation is the same as mine: 94 percent. With any luck, he should be cured. He should be ready for kindergarten when it comes, able to keep up with the other kids. His mother smiles gently down at her son, three weeks into his second childhood. His lips are still pink. On this afternoon, that is the only thing in this world that matters.

Drawing”

Powerful and moving and beautiful to those of us who have been down the same road.  Gratitude inspiring to mother’s whose babies lives are in the hands of these cardiac heart surgeons and to those like Taussing who pioneered the way for our “blue babies” to become pink.

As an aside….the picture from this post features a movie entitled “Hearts of Hope” that chronicles a behind the scenes look at the pediatric heart surgical team at The Heart Institute for Children.  I haven’t seen the movie but, if you click on the link above, it will take you to the website for it.

September 6, 2009 at 8:32 pm Leave a comment


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