Posts filed under ‘CHD stress’

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.

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May 25, 2010 at 4:57 am 2 comments

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

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.

May 2, 2010 at 8:24 pm 7 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


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