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Lessons for every parent, from moms of babies who needed surgery

Posted on Dec. 10, 2013 ( comments)
Kayla Harvey, an ARNP in the Cardiac Surgery Program at Mary Bridge Children's Hospital & Health Center, stands in front of a tree decorated by the Mended Little Hearts group, which supports children with congenital heart defects and their families.

“I carried my son and before you know it, it was time for him to go (into the operating room). I was not allowed to enter. So I handed my son over to the nurse … I cried, I watched my son go through the door and I just felt like dying. It was the most difficult part of my life, entrusting my son to others.” 

-- Journal entry written by the mother of a newborn who needed surgery.

Mothers whose infants underwent complex heart surgery are sharing what they learned from the experience, in a study published in the current issue of the medical journal Heart & Lung.

The study aims to offer insight to other families who have an infant that needs complex heart surgery, as well as help health care workers provide better support and education for families.

Resource for parents: Family Support Team packet

The study’s primary investigator and lead author is Kayla Harvey, ARNP, who works in the pediatric Cardiac Surgery Program at MultiCare Mary Bridge Children’s Hospital & Health Center in Tacoma, Wash.

The study examined journal entries from eight mothers who were asked to write about their experiences before, during and after their baby’s surgery.

The regional chapter of Mended Little Hearts, a group that supports families of children with congenital heart defects, was used in the validation component of the study.

Some of the advice from the mothers:

Connect to the strength within you and advocate for your child

“Never give up being your child’s strength.”

“Try to be a source of love for your child throughout the process. Try to radiate love instead of worry.”

“Become an advocate for your child and fight with all of your might if you think something is not right in your heart and soul.”

Recognize the unknowing and the need to find meaning

“Just take comfort in these three things that I held onto:

• There is no known cause for the heart defect (it is NOT your fault).
• Everything happens for a reason and that reason may be beyond your understanding until a much later time.
• Surgery is the only option, it is not some choice you have to fret and worry over. It is what must be done to give your infant a shot at life.”

Foster faith and trust through spiritual connection

“All a mother can do (when) she is placed in a position where she has no control of the situation – always remember prayer and faith goes hand and hand.”

“God might not answer your prayers the way we want or in the time we expect, be he always hears and answers.”

Seek support from family, friends, and other parents with similar experiences

“Establish a group of people to be your support team. These folks should be stable enough to provide encouragement, strength, service, (and) compassion -- whatever you need, when you need it.”

“Have family or friends help out in ways you need it and in ways you won’t expect to need it, but do (meals, cleaning, shopping, etc.)”

Make time for self care

“Take a break away from the hospital, even if it’s just five minutes.”

“Eat, sleep, and shower. Sometimes we must remind ourselves life goes on outside of the hospital. Take a walk, just breathe.”

By analyzing the journal entries, the study identified and validated six themes that emerged from the mothers: 

• Feeling Intense Fluctuating Emotion
• Navigating the Medical World
• Dealing with the Unknown
• Facing the Possibility of My Baby Dying
• Finding Meaning and Spiritual Connection
• The umbrella theme of "Mothering Through It All."

The study concludes that through a clearer understanding of the experiences described by the mothers, health care providers may gain insight as to how to better support mothers of infants undergoing heart surgery.

“Over the years, I have come to appreciate the challenge of the situation that parents find themselves when they are faced with having a child who needs heart surgery,” Harvey said. “I was particularly impressed with the way that some of the mothers were able to preserve their role as mothers despite the difficult circumstances. I quickly became interested in finding a way to better understand the perspective of these mothers and hoped to shine a light on the seemingly intangible ways they maintained a bond and connection with their child.”

Harvey has presented the research at The Congenital Heart Surgeons Society conference in Chicago and at The Western Society of Pediatric Cardiology conference in Monterey, Calif.

“My hope is that the results of the research will provide a framework from which members of the health care team can build family-centered, evidence-based support interventions,” Harvey said.

Increased newborn screening

Congenital heart defects are the most common type of birth defect in the United States, affecting about 8 of 1,000 live births per year.

In 2011, the American Academy of Pediatrics recommended all hospitals provide newborn screening for congenital heart disease by assessing oxygen saturation within the first 24 hours of birth. If this practice is accepted as standard of care, the frequency of early diagnoses of CHD will likely increase. Health care providers in non-tertiary care centers who previously had limited exposure to this population may find themselves in need of further guidance to best support parents during the infant’s diagnostic and transfer processes.

Better support for families

One recently developed support intervention at MultiCare Health System is called The Family Support Team Packet, which appears to fit the needs of one aspect of the mothers.

The Family Support Team packet is resource that can be used to help families delegate everyday tasks and allow parents/caregivers to focus on their child while he or she is in the hospital or in recovery. Harvey led the team that developed this tool and championed the distribution across MultiCare Health System, widening it from pediatric heart surgery families to all pediatric families and finally to all patients, including adults.

About the study

The primary study participants were recruited through MultiCare Mary Bridge Children’s Hospital, a tertiary urban pediatric medical center in the Pacific Northwest, following approval by the hospital’s institutional review board. The medical center provides a wide variety of ambulatory and inpatient services for children with acute and chronic health conditions who come from a broad geographical area, including other states. 

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