Lessons From a Dying Baby

Alarms on the life support machines went off constantly in the ICU.  The electronic screaming signaled wires were disconnected, monitors weren’t working, medicine and saline bags were low, or that there was some other problem that needed attention.  When the alarm went off two beds down from my daughter, it was just one more artificial sound in a room filled with artificial life.  The sudden activity surrounding the two-day-old baby was how I knew something was wrong.  Nurses surrounded him, checking wires, administering medicine, and paging his surgeon with an efficiency that bordered on panic.

His tiny body lay there.  His only movement was the little rise in his chest when the breathing machine puffed air into his lungs.  He was covered with tubes and wires and medical tape, looking similar to my daughter, only he was much smaller.

The surgeon arrived within minutes.  The alarm was still going off, signaling the baby’s cardiac arrest.  The surgeon was our surgeon—the man who had worked on my five-month-old daughter’s small heart for nine relentless hours.  He had the perfect balance of scientific fascination and human compassion.  Determined that he could solve the intricacies and stubborn problems in my daughter’s heart, he refused to let her die.

He scrubbed in at the sink.  His nurses slid blue surgical gloves and a sterile green gown on him while he surveyed the information on an EKG printout.  There was no time to move the baby to an operating room.  The curtains were whisked around the baby’s bed and the ICU was on sterile lockdown.  No one came in and no one went out.

The sounds behind the curtain were quiet.  Hushed voices and murmured words floated towards my daughter’s bed.  After fifteen minutes of trying to read a magazine, hoping to take my mind off the circumstances going on behind the curtain, the nurses slowly pushed back the curtains.  The surgeon asked the nurses to call the parents to his office and left, looking defeated.  The nurses were left standing around the baby, their faces revealing that the outcome was not good.

The machines still gave the baby the appearance of life, inflating and deflating his lungs.  His heart monitor told the truth, a slow heartbeat with little spikes in the baseline infrequently peaking.  His tiny heart was barely beating, barely sustaining.

The parents soon gathered around the baby.  They were young, close to my age, and it appeared that he was their first baby.  The mother rushed to her baby’s side and wept quietly as she held his hand.  The baby’s father stood behind her, also crying quietly.  Grandparents, aunts, and uncles began gathering around the bed.  The curtains were drawn to offer the family some privacy during the final moments of their son’s short life.  The visual barrier did nothing to block the heavy despair in the ICU.

I noticed the baby’s grandparents stepping out from behind the curtain.  They had arrived shortly after the attempt to save the baby’s life had failed.  The grandma saw me watching them.  I was embarrassed at my empathetic curiosity and glanced away.  She managed a smile, letting me know that my indiscretion was forgiven.  As she walked by my daughter’s bed toward the ICU door, she stopped.

“Your daughter is beautiful.  How old is she?”

“Five-months-old,” I responded, feeling uncomfortable.

She watched my daughter for a moment, the machine supplying her oxygen, the IV’s, chest bandages, and plastic tubes the same as those covering her grandson.

“You’re so lucky to have her.”

Her voice quivered a little.

“I’d give anything for five-months with our grandson.”

She smiled.  She patted my daughter’s chubby leg before leaving the ICU with her husband.  I instantly felt the weight of her statement.  I bit my lip and the tears in my eyes blurred the room around me.  I kissed my daughter’s head and left the ICU, seeking out the refuge of a bathroom.  Inside, I locked myself in a stall and cried.  Five months of emotions slowly escaped.  I had cried often in those months but this time my crying felt good.  My tears brought a relief.  I had experienced five amazing months with my daughter and it looked like I would enjoy many more.  I was lucky.  I was blessed.

I finished crying, feeling the emotional weight of the last five months dropping with my tears.  Dreading the scene in the ICU, I walked around the quiet night halls of the hospital, alone with my thoughts.  After some time, I returned, knowing when my daughter opened her eyes for the first time after her surgery, I had to be by her side.  I took my place beside her bed, running my fingers through her soft hair.  I watched a janitor mopping the floor two spaces down, which was now just an empty bed.  I felt guilty when I looked back at my daughter.  She was here and he was gone.  But guilt made way for gratitude.  Days later when I left the hospital with my daughter, laughing and smiling, I carried that gratitude with me—along with the memory of a baby boy who taught me the value of what I had.

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March 25, 2010 at 1:39 am 3 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

Things I Wish I Had Known

The world of Congenital Heart Defects is a roller coaster of ups and downs and twists and turns.  Being a parent is hard enough.  Being a parent to a child with special needs and a special heart is like learning astrophysics.  The diagnosis, the fear, the hospitalizations, the surgeries…all of it is overwhelming at times.  We are down the road a bit in this journey with CHD, down the road enough to look back and see how far we’ve come and where the road came from.  Looking back, I see a few bumps in the road I wish I had known before the journey, roadblocks that would have been easier had I been prepared, and curves in the road that took me completely off gaurd.  I share them here.  Every person’s journey on this road is their own, unique and different, but maybe some of my surprises can benefit someone else who is just starting on this road called CHD.

1.  I wish I had known that no one else will fight for my child as well as I can.  When it comes to her health and wellness, her hospital stays and her emotional needs, I know her best.  Doctors, nurses, interns, surgeons…all these people are vital in her care but, I know her best.  It is okay to question a doctor or surgeon.  It is okay to seek a second opinion if I feel I need one.  I do not have to sit by and allow them to dictate her care to me.  It is easy to be so overwhelmed that you just wait and listen numbly,  nodding and trusting so completely that they can save your child that you will do anything…if that feeling arises in the pit of your stomach, telling you that something isn’t right or something different should be done….listen.  The relationship with the cardiologist, surgeons, and pediatrician need to be one of trust and communication.  I went through three pediatricians before I finally found one I trust completely and can ask, any time of day or night, about anything.

2.  Life is too short to lose even a second with a heart child to mourning.  Those who are diagnosed in-utero have a time for mourning and coming to grips with a CHD.   Those who learn of their babies defect after delivery have to mourn at the same time as becoming a new parent.  The mourning often overshadows the joy.  We found out at three days of our daughter’s heart condition.  I cried for days.  I walked around numb and fearful and angry and confused…so many emotions to deal with.  She slept between my husband and I because I was so scared she might stop breathing in her sleep.  After she would fall asleep I would weep, as quietly as possible.  One night, my crying woke my sweet husband.  He asked what was wrong.  I was shocked!  How could he ask what was wrong?  I sobbed out, “I don’t want her to die.”  He looked at me and said, “We don’t know what tomorrow will bring.  We have her with us now though.  Shouldn’t we be happy for the time she is with us?”  I was stunned….he was so right.  What if she was only her a short time and I wasted that time mourning, instead of soaking up every last ounce of joy and love she brought with her.  I still had to work through the emotions of mourning, but I no longer let it consume my every thought.  Instead, I focused on every moment I had with her in my life.

3.  Children with CHD will ALWAYS live with CHD.  My daughter had a very rough open-heart surgery to fix her Tetralogy.  Nothing ran very smoothly and she was put on the bypass machine three separate times.  We were “prepared” by the hospital staff for the worst while hoping for the best.  We were blessed with a positive outcome.  Abby has been told her surgery story time and time again.  How rough it was, how she almost didn’t make it out of surgery, how the surgeon told us it was hard, how they prepared us for her to come out with brain damage….all the amazing terrible circumstances she overcame.  Abby is now facing her second open-heart surgery.  She is ten-years-old and imagine what all those stories have done for her confidence in this upcoming surgery.  She is fearful…fearful of possibly dying, fearful of suffering brain damage, fearful of the doctors not being able to fix the problem…she is scared and part of her fear is my fault.  Her story is amazing and she is a miracle.  I told her her heart story because it is so amazing, however; I wish I had the foresight to see how it would effect later surgeries.  My telling would have been gentler, filled with a focus on the progress and miracle of it instead of on the terrible circumstances she had to overcome.

4.  Others don’t understand, and many never will.  Abby looks perfectly healthy.  She is smart and outgoing and likes all the same things other kids like.  She doesn’t look fragile by any means.  The constant worry and fear can’t be fathomed by others.  Finding out Abby has been exposed to strep throat or the flu knowingly makes me CRAZY!!!!  I want to yell…WHY? WHY WOULD YOU DO THAT?  Then I must remember…she looks healthy.  They couldn’t possibly fathom what strep throat, the flu, second hand smoke, bad air quality…and so many other threats and germs could do to her.  All I can do is remind and ask politely and hope they will respect since they can’t understand.

5.  The heart defect does not need to limit my child.  Having a child with CHD does mean as a parent I need to be extra vigilant and diligent.  What having a child with CHD doesn’t mean is that I need to make her and everyone around remember that she is disabled or fragile.  I know how special Abby is in so many ways, but my relationship with her will never be like anyone else’s.  So, instead of focusing on her CHD with others, I let Abby forge her own relationships her own way.  I inform those who need to know of her condition, like school teachers and others who see her, but I inform them quietly.  I don’t make a big spectacle, I don’t even do it in front of Abby.  She didn’t even  know I told her teachers about her heart until last year.  I NEVER want her CHD to define her.  She has so many amazing talents and qualities….her CHD is a part of her but does not define her.  She is now getting more comfortable with it, she understands it more and even starting to spread awareness and talk about it more with others.  But, until she wants to talk about it and share it and tell the world about it, I won’t force it upon her.

There it is…my five things I wish I had known when the journey began.  All CHD parents probably have different things than mine.  This is a beginning of some of the things I would do the same or differently.  Hindsight is 20/20 but awareness can help!

February 20, 2010 at 5:30 am 7 comments

The End of A Beginning

CHD Awareness week came and went.  This year, I really wanted to help.  At the end of it all, I feel a world away from the awareness I hoped to raise.  I blogged all week, posted facebook statuses about CHD, was successful in getting Governor Herbert of Utah to issue a proclamation as well as Mayor Godfrey of Ogden, Utah.  Mayor Godfrey was kind enough to present his proclamation to our daughter.  I read about congenital heart defects and talked about it….with lots of people who already know about it.

What I was NOT able to do that I really wanted…

*Get media attention.  I contacted numerous members of the media, hoping they would cover the proclamation issue or write a story about CHD or cover it on the news.  My queries fell on DEAF ears.  I saw lots of cute stories in our local paper about a darling newlywed wife who covered her husband’s car in construction paper hearts, fun crafts to make for Valentine’s Day, a local Chocalatier who was named as one of the state’s best…lots of cute stories about Valentine’s Day, but not a word written or spoken about CHD!  Even our mayor’s office attempted to contact the media, they ignored his query just as they did mine.

*Sponsor an event.  I came across the 1 in 100 group too close to start anything.  I thought about a balloon launch, I read about a family who has teamed up with a local restaurant to offer 20% off dinner and raise proceeds on February 14, I heard about a friend who sets up a table at our Children’s Hospital…but I did not sponsor an activity.

*Get as involved as I wanted to.  I’ve read lots of posts and discussion boards this last week with lots of people complaining about how hard it is to gain media attention, get famous spokespeople or endorsements from celebrities, get legislation even introduced let alone passed.  I’ve heard that some feel there are way too many small localized groups and what we truly need is one large organization.  The American Heart Association is certainly large and national, however; they focus more on adult heart disease.  Celebrities, epsecially women, attend the annual heart truth red dress fashion show, in support of heart DISEASE which is much different than heart DEFECTS.  Likewise, the March of Dimes devotes a small portion of their time and interest to CHD, but focus more on premature birth and a generalized fight against all birth defects.

So, what is needed?  Where do I go from here?  If you had a successful CHD week please let me know what you did and HOW you did it.  If you have a successful non-profit organization that supports congenital heart defects, congenital heart defect research, support to patients and families affected by CHD, sponsoring heart surgeries for needy individuals and families…anything that is successful, please let me know.  I hope to rally the troops, continue my fight against this killer, and devote more of my time to overcoming and defeating Congenital Heart Defects.

February 16, 2010 at 4:40 pm 3 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

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