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A Quiet Enemy to Recovery–Depression

Daryl Tomlin made a startling statement in an article published December 23, 2008 called “Depression After Open Heart Surgery.” He explained that “The greatest injustice done anyone facing open heart surgery is the lack of information and preparation for the depression that may follow.”  Well, sure, a 38-year-old adult may go through depression after such a major operation but what about our children?  Do they suffer depression after open heart surgery?

I discovered that the risk of depression after surgery for children is real and often present and overlooked.  A study performed in Korea at three major cardiac centers found that in 231 adolescents between the ages of 13-18, depression was a problem for 62% of patients (2008).  Some studies suggest that females have a higher incidence of depression following open heart surgery.

In 1998 the Alberta Children’s Hospital and the University of Calgary conducted a similar study.  This study contained similar results with more information regarding depression after open heart surgery.  Their study found that children with cyanotic heart defects (a defect resulting in deoxygenated blood passing through the body–often giving a blue appearance) were more likely to suffer from depression.  Their study stated that “children with cyanotic forms of congenital heart disease demonstrated more fears of the unknown, physiological anxiety, depression, and delinquent behaviors than the acyanotic children with congenital heart disease.”

While every child is different and every operation and recovery unique, parents of children and adolescents undergoing open heart surgery should be aware of this possibility.  Knowing the reasons and signs to watch for may help in the recovery process.

Some health professionals feel that their may be physical reasons behind this depression.  Tomlin states that some people believe the heart-lung bypass machine, no matter how safely screened the blood is, produces tiny air bubbles called emboli that are introduced into the body.  These tiny air bubbles can travel to the brain and block blood flow to the brain.  If too much air is present, mini-strokes or major strokes can occur.  Many feel that patients on the heart-lung bypass machine experience this mini strokes that alter areas of the brain slightly, causing depression.  Additionally, having decreased blood flow and higher oxygen levels in the brain can cause depression.  This may account for why children with cyanotic heart defects suffer more depression than those with acyanotic defects.

Others feel that the sheer volume of drugs and medications used during and after open-heart surgery may be to blame for the depression.  Tomlin states that blood thinners, pain medications, IV fluids, blood and blood products, and other drugs all received within a few days may “lead to a change in brain chemistry that could exhibit itself as depression.”

Depression is often hard to pinpoint.  For a child who has undergone open-heart surgery, complaints of pain, fears, sleeping problems, and other unusual symptoms may be present for two to three weeks after surgery.  These symptoms are normal and nothing to be alarmed at.  The body must adjust and heal before the patient feels “normal” again, however; if symptoms persist after four weeks, depression may be to blame.

Signs to watch for include:

*Apathy–apathy is a lack of interest or lack of enthusiasm for anyone or anything in the child’s life.  Apathy presents itself in a complete boredom or disinterest in all things that used to interest or excite the patient.

*Anger–anger now and then is normal for anyone.  Severe anger should be watched closely though, especially in a usually agreeable and calm child.  If unusual anger persists four weeks after surgery, you should talk to your child’s pediatrician.

*Feelings of doom–children may show strange fears of natural disasters or show feelings of sure destruction and doom.

*Desire for prescription medication–older children may develop a need for prescription pain medication.  They may look forward to taking it and  take it as often as possible.

*Seclusion–children may want to be left alone or stay in their rooms for hours alone.  They may not want to attend events where other people are present and may exhibit a desire to stay home and secluded.

*Persistent sadness–sadness that doesn’t seem to go away or a lack of happiness in usually happy activities can signal depression, especially in children.

*Persistent sleep problems–children who sleep too much, exhibit a fear of sleeping, or can’t fall asleep may have depression.

These signs are good to know and watch for following open-heart surgery.  Any of these signs that linger more than a month after surgery should be discussed with a pediatrician or other caregiver.

While some people feel that depression is inevitable in those who will develop it, other studies have shown disagreeing results.  The study conducted in Korea found that children with previously demonstrated resiliency to new situations, attentive and caring parent or parents, and proven high academic or personal achievements seemed to have less depression and psycho-social problem following surgery.  The study stated “that adolescents with higher resilience and an affectionate parent were less depressed.”

Additionally, some psychologists and therapists believe that having and learning coping abilities before surgery and, practicing them after surgery, may help children overcome depression.  Music therapy, meditation, relaxation, and deep breathing may help to relieve patients of depression and anxiety following open-heart surgery.

In his article, Tomlin stressed that if Cardiac Rehab is available, this can also help overcome the effects of depression.  Tomlin wants others to know that “if you or someone you know are facing open heart surgery, remember that depression is likely and a very dangerous enemy during recovery from open heart surgery.”

Ask for help if your child needs help.  Make sure their recovery from open-heart surgery leaves them with a Perfect Broken Heart both physically and emotionally.

The Others

Abby’s Tetralogy of Fallot can best be described as life altering.  From the moment we found out she had a congenital heart defect, our lives were forever altered.  Nothing would ever be the same for us again.  I would never look at anything in quite the same way–our lives were changed.  By the time our second child came along, three years after Abby, our changed world was normal.  In our eyes, CHD was just something we dealt with.  Sometimes it just floated along in the background and other times it took  a more commanding presence.  Abby’s younger brother, Nathan, has never known life without CHD.  He lives with it, like the rest of us.  It is part of his life just as much as it is for the rest of us.  In the world of CHD victims, he is a silent victim.  It hasn’t physically altered his heart but it has touched his heart in other ways.

From as long as I can remember Nathan has been Abby’s biggest fan.  As a sibling to a heart child, he has learned to be patient and understanding.  He is sensitive and empathetic to the feelings of others.  As the date for Abby’s second surgery nears, I can see the toll it is taking on him.  My heart aches for him.

On more than one occasion he has made comments like, “I wish summer was over so Abby’s surgery would be done” or, “Why do they have to cut Abby?” or, “I don’t want Abby to get hurt.”  These talks often are accompanied by tears or frustrations.  As her date draws closer, his emotions are more frequent…he is scared for his sister and dreads her surgery almost as much as Abby herself.

If that was all he had to deal with, I think we could handle it.  But that is not all a sibling to a heart child deals with.  On top of fear and sadness, Nathan has some additional emotions pulling at his heart strings.  Abby wanted nothing more than a Nintendo DS to take to the hospital.  She has wanted one for over a year.  We made her a deal that if she worked toward helping to pay for it, we would buy one for her before her surgery.  She readily agreed.  Last weekend, she collected some items and sat outside at a community garage sale and earned enough money to buy her DS.  Her aunt took her to the store and they purchased her DS.  The moment she came bounding into the house with her new purchase, complete with games and accesories, I saw the hurt in Nathan’s eyes.

In addition to fear and anxiety, you can add jealousy and alienation to his list of emotions.  I felt terrible.  He mumbled to me, “Abby gets a DS?”  I put my arm around him and tried to explain that because she would be in the hospital, and because she earned the money for it, she was able to buy one.  While Nathan understood what I was saying….it certainly didn’t change the hurt and jealousy his little seven-year-old heart was feeling.  And to add insult to injury, later that night as I was tucking him in, he told me he was sorry he got upset over Abby’s DS…he felt bad for being upset.  Now he has guilt to add to his emotional baggage.

I have been reading everything I can find on how to help these “other” victims.  While the research and field of CHD is not silent on the subject, it certainly does not contain a wealth of information either.  I did come across an article that has been particularly helpful by Dr. Lauren Solotar, Ph.D.  The article was written for siblings of Special Needs in general.  Solotar explains that siblings may become abusive, argumentative, combative, and frustrated.  Other siblings may become overly helpful or attempt to become a “perfect” child.  Either way, these signs are clues to help parents know that they are needing help.

Solotar gives some steps parents can take to help siblings.  These steps include:

*LISTEN to your child.  Ask them to share their feelings and let them know you understand HOW they are feeling.  “Are you telling me you feel angry over…?”  or “So you feel left out when….?”

*Let them know it is okay for them to feel how they are feeling.  It is important not to tell them don’t be mad or you shouldn’t feel that way.  They need to have their feelings validated and they need to know that there is nothing wrong with feeling jealous or angry or alienated.  Help them find healthy outlets for negative feelings and help them know it is okay for them to feel how they do.

*Make siblings your ally.  Help them understand the condition of their sibling and help them understand what they can do to help.  It is important not to make them feel unnecessarily responsible for the child but having them help and understand the CHD child can help them feel less pushed aside.

*Be fair.  Don’t make your healthy child do all the chores and work while CHD children are excused.  Find ways of making chores and other activities fair.  CHD children can pick up toys or help wash dishes.  It is important not to let special needs children “off the hook” in the eyes of siblings.

*Give each child individual attention.  Siblings who are acting out especially are signaling they need some special one-on-one time.  This special attention is imperative to making them feel secure and important.

Dr. Solotar explains that “With your encouragement and support, your typically developing child can become a more loving and understanding person because she or he has a brother or sister with autism.”  I believe the word “autism” could easily be replaced with the words Congenital Heart Defect as well!

The other victims of CHD need just as much love and attention if not more to ensure that they never feel pushed aside.

If I could take away Nathan’s emotions, I would in a heartbeat.  Since I can’t, I can do everything in my power to let him know that he is every bit as important and loved in my eyes as his heart sister.  And in the end, I think he will come out a better person in spite of CHD!

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!

I Never Knew I Could Feel This Way

We’ve lived with you for ten years now, an uninvited and unwelcome guest in our family.  We had no choice really–You forced yourself upon us when our beautiful baby girl was born with you altering her perfect heart–breaking it in a sense.  Although you aren’t a guest we would wish to have, I have learned volumes from our journey with you.  I’ve learned about emotions that sounded nice on paper but never really knew what they felt like.  Emotions like grief, anxiety, fear, hope, faith, communion, exultation–just to name a few.

But last night, you taught me a bit about a new emotion, one I have never known with such force until then–hate.  It really is an ugly word.  I’ve never liked it and I’ve never been one to hate anything or anyone easily.  But last night you showed me that hate does live within me.  I guess I could use another word that didn’t sound so harsh, to make myself feel better.  I could call it loathing, dislike, disdain…but really it all boils down to hate.

Abby poked her head in the bathroom at bedtime, while I was helping her little brother’s brush their teeth.

She made the comment, “Today is 31 days from my heart surgery.”  She made the comment so matter of fact, like it was normal.

I acknowledged her comment, using the positive reinforcement we have been using to deal with you lately, “Yep.  Won’t it be great to have it all done?”

She shook her head, “No.”

I could see she wanted to talk.  So her daddy and I ushered the boys to bed and took Abby to her room to talk.  She began talking about how scared she was.  She began telling me that she was scared of being in the hospital, where it is big and scary.  She is scared of being alone, waking up and me not being there.  She is scared of pain…she is scared of so many things.  We reassured her.  We promised she wouldn’t be alone.  We promised that I would be there when she woke up, no matter what time or how long I had to wait for her to wake up, we promised her that the doctors and nurses would make sure she had all the medicine she needed not to be in pain.

Suddenly, she broke down into tears….despairing, grief filled tears.  She sobbed, “I don’t want to do this!  God has promised us that he won’t give us anything we can’t handle and I can’t handle this.”

She layed her head in my lap and cried…and I cried too.  I couldn’t hide behind my optimistic “it’s going to be alright” face.  And at that moment I HATED you.  I hated you for picking on my sweet daughter, a girl who lights up the room when she enters.  A girl with the faith of Job.  A girl who doesn’t deserve to be bullied by you.  You broke down my defenses and made me feel that I was letting her down.  When she saw me crying she got even more fearful and began questioning, “Mom, why are you crying?  Am I going to be okay?”

You.  Picked.  On.  The.  Wrong.  Girl.  You see, I don’t believe in chance or fate, and I don’t believe you are with us by accident.  You are our trial and although Abby looks small and fragile…her soul and heart is as mighty as they come.  She will overcome you along with thousands of others who are fighting against your ugly devastations.  You hurt and rob and take…but we will never stop fighting against you.

Although you have taught me so much about life and living and feeling and it is true, I wouldn’t trade those lessons, I don’t want you to hurt others.  I don’t want another mother to carry the grief of losing her child to you.  I don’t want other parents to suffer through surgeries and hospital stays.  I don’t want another child to ever have to say through sobs, “I don’t want to do this!”  So, for now, consider this a new level in our journey with you.  I accept this trial you have thrown in our way…I will learn from it and grow in ways I would have never thought possible, just as I have for ten years.  But I will never stop fighting against you, CHD.

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

If you missed the first part of this short series on the emotional toll of having a child with CHD, you can read it here.

Where Parent’s May Look for Relief

This interesting article goes on to state that the early days of learning of the diagnosis are often very stressful on the families, especially the caregiver.  The doctor’s conducting this study explain that “The initial stage of diagnosis is a time when there is a lack of information and a groping for the characteristics of the illness.”  This initial stage of a lack of information leads to a search for resources and support.  Families will look for all information available from medical professionals, books, social support groups, and while not mentioned specifically in the article, I would like to add online information.

Additionally, the study found that a large number of these families turned to religion for support.  Religion can offer emotional relief as well as a hope in a higher power which may be able to help heal a child.

Lastly, the parents will look to other patients or caregivers of patients.  This step appears to help in easing the stress and emotional upheaval.  Finding out what to expect, how to care, where to seek care, and how a CHD has affected others is often an important activity for CHD parents.  One mother said, “I think other patients’ experiences are the most directly relevant.”

Maintaining Family Function

Researchers found that all families attempt to create a normal family and home environment where children, heart children and siblings alike, can grow up step-by-step and still maintain other family functions.  This process involves reframing or redefining the meaning of the illness, Unifying the family as they come to terms with the process and prepare for surgery, and nurturing normality.

When families have a baby with CHD, they must reframe the illness in their mind to take on some kind of meaning.  The majority of participants in this study reframed the illness by assigning a higher value on life.  Parents admitted that having a critically ill child that faced open heart surgery created a sense that life was more meaningful.  One mother put it beautifully when she stated, “I feel this is one of the most significant things that’s ever happened to us, even more than our marriage (laughter). I do think he has helped us to grow inside, because we hadn’t met any life and death issue up
to now. So, he gave us a chance to face such an issue. And he is such an endearing baby to us. Since the time I gave birth, we’re inseparable.”  Many families are cemented together through the trials faced with a CHD baby.

This uniting extends to the entire family.  The family of the CHD baby understands that their position as support to each other is important.  Spouses generally become more concerned for each other and even siblings showed great concern over each other and the child facing an upcoming surgery.

Lastly, it appears that heart families have a tendency to nurture normality.  Many families actually “forgot” about the heart condition during normal day-to-day activities.  They tend to have a desire to encourage activity with those outside the CHD world and they have a desire to raise their child normally.

Conclusion

This article, in discussing the ramifications of their findings, corroborated the findings of Jeffers, a researcher and cardiologist in the field.  Jeffers stated that  “He discovered that holding the concept of ‘it will be better’ is a great support during the decision-making process.”

The article ends by stressing that:

“When a family is confronted with a child with CHD having a need to              undergo heart surgery, the whole family is facing a stressful decision-making process. According to the results of this study, it is obvious that the caregiver and their whole family experience psychological distress, role re-organization and remodelling of their family functioning.”

Because of this it is suggested that families with a newly diagnosed CHD baby should be offered emotional support, information on what to expect and how to treat the baby, and a strong social support system for both emotional needs and medical needs.

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.

Hands That Lift

I just returned from a luncheon.  It was a luncheon specially for heart moms.  It was put on by Intermountain Healing Hearts (IHH).  The emotions of the afternoon are still swirling around, filling my heart and head with thoughts and feelings I haven’t felt in a long time.  I had never attended an event with other heart moms….little lone 200 of them in one room.  From the first moment of walking through the door and taking my seat I was amazed at some of the other mothers I met.  I met two sisters, one who had a heart condition herself, but both having children with heart defects as well.

Amazing.

I met a mother who had lost a baby to Tetralogy of Fallot with Pulmonary Atresia.  This is the same condition as my daughter, only she doesn’t have Pulmonary Atresia.  This mother’s heart journey does not end there.  She had a second child with Tetralogy of Fallot who was a two-year-old who had a successful correction at four months.  This mother is pregnant with her fourth child, who also has Tetralogy of Fallot.

Humbling.

I listened to Margaret Cardall, mother to award winning musician Paul Cardall who was born 37 years ago with Tricuspid Atresia.  together they have undergone numerous surgeries, including a heart transplant only months ago and multiple life threatening experiences.  She spoke so beautifully, and right to my soul.  She explained that it is alright to feel tired.  She hit the nail on the head when she spoke of wanting just “two hours” of sleep and then she would “be okay”.  I think she stole those very words right from  inside my mind.  And she made my heart soar when she explained that things would be okay.  She made me cry when she explained that it is okay to continue planning life and living life as it comes.  With my Abby’s surgery only one month away, I feel as though I have stopped planning.  Margaret Cardall reminded me that I should never put off doing anything because of what the future may hold.

Validated.

Next, Paul Cardall played music and spoke a little.  His first songs were beautiful and included Gracie’s Theme.  Gracie Gledhill passed away last year after an unsuccessful heart transplant.  As Paul began to play her theme, I looked straight ahead at Gracie’s beautiful mother, smiling gently as Paul plays this beautiful tribute to her daughter.  And suddenly I’m crying.  Tears are streaming down my face and something heavenly is there in the room with us.  I can feel it.

At a loss for words.

Paul explains that while he was at Primary Children’s Medical Center, the same hospital Abby had her surgery and the same one we will be back at on June 1st, he knew God was there.  From unseen voices in the night to the feeling of heavenly attendance, he knew God existed and was present at this special children’s hospital.  I have known that too, for ten years now.

Understood.

The afternoon lifted my spirits and left me feeling a little less alone.  The road ahead brings me right back to the doors of one more open heart surgery.  My sleepless nights and restless dreams are nightly.  My episodes of anxiety heart racing, can’t-catch-my-breath, feeling of dread are cropping up more frequently.  My fears of how I’ll walk down that hallway and watch my daughter walk through the doors with an anesthesiologist and put on my brave face for her can’t be pushed away as easily.  But, I know that others have walked the road with me and I know that others will be there supporting us.  Today, I found that hands are all around, waiting to lift us up and fill our spirits when ours are lacking.  Thank you IHH for an afternoon of exactly what I needed.

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.

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.

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!