Download Questions to Consider as You Prepare for Heart Surgery

Questions to Consider as You Prepare for Heart Surgery
At Advocate Children’s Hospital, we recognize that an expectant parent of a child
with complex congenital heart disease is faced with a lot of significant stressors.
Thanks to the help of several parent partners, we have created a list of helpful
questions that they found helpful (or would have found helpful) as they were going
through the process of choosing a heart center to coordinate the future care of their
child. After the list of questions, there is a list of specific answers that the parents
and medical team wanted to share regarding Advocate Children’s Hospital in Oak
Lawn.
Questions for the Surgeon:

Are you board certified in pediatric cardiac surgery?

How many pediatric heart surgeries do you perform each year? For this type of surgery?

How long have you been in practice? How long have you worked at this hospital?

What are the surgical options for my child? Is my child a candidate for non-surgical options? Can
you explain the risks and benefits of both? What are the risks of not having a surgery performed?

What procedures are available for our child’s condition? Which procedure would you
recommend for our child’s condition? (If there is a choice.)

How long has this particular surgery been performed nationally and locally? How long have you
performed this surgery?

What is the success rate we can expect for our baby's specific condition? (Short term, after 5 years,
10 years and longer.)

When would my child have the surgery?
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
How long does the surgery take? What is the average length of stay in your hospital after each
surgery? (How long in the ICU, how long on the general floor.)

Should we consider storing the baby's cord blood in case it can be used in the future to help with
heart function? (If a baby)

What kind of care/special equipment will the child require at home? (oxygen, feeding tube, etc.)

What type of medications are required after surgery and how long would the child be on them?

What type restrictions will my child have after surgery? Any long term restrictions?

What type of follow up care is recommended (Home Health Care, Speech, Physical and/or
Occupational Therapy, Pediatric Cardiologist visits, etc.)?
Questions for the Fetal Cardiologist:

Can you help us choose a Pediatrician and Pediatric Cardiologist in our area for follow up? Who
will be my contact person at the hospital once we are discharged?

Are there any environmental factors that we would need to eliminate in our household (smoking,
pets, etc.)?

Can my child receive immunizations?

Can you give me the names of other parents whose children were treated for this heart condition
at this hospital?
Questions for Maternal Fetal Medicine:

Will I need to have my fetal monitoring at the hospital prior to delivery?

Can I have a vaginal delivery? If not, what are the risks of a C-section? How long would I expect
to be in the hospital?
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
Who do I talk with to get approval to hold my baby after delivery? Do I need to get this approved
ahead of time?

How many babies with this condition are delivered here annually?

When would I need to travel to this hospital (if the facility is far from home) to deliver the baby?

How does the OB staff work with the surgical staff?

Who is "in charge" of the baby in the delivery room?

Will I be able to breastfeed the baby? When?
Answers for Your Hospital Experience

Can we donate blood for the surgery? How do we go about doing this?
o We are happy to use any directed blood donations that are compatible with your child’s
blood type. This cannot be determined until after birth. In addition, babies less than 4
months of age require some special testing to be done that can disqualify an otherwise
good blood donor. The blood donation must be done 3-6 days prior to surgery at any
LIFESOURCE donation center. Call the cardiac surgery office at 708-684-3029 for more
information on blood donation.

Is this a dedicated Children's Hospital? Is there a dedicated children's unit and a Pediatric
Cardiac Intensive Care Unit dedicated to children with heart defects?
o Yes. Advocate Children’s Hospital offers the best in post-surgical care in one of our
pediatric intensive care units (PICUs). Our state-of-the-art Pediatric Surgical Heart Unit
(PSHU) is primarily geared for children with heart disease and staffed with experienced
nurses dedicated to their care. This is one of the oldest dedicated cardiac ICUs in the
country. When your child is ready to be moved from the PSHU, he/she will be
transferred to the general pediatric telemetry unit where he/she will continue to be
closely monitored.
o Your child may begin his/her care in the Neonatal Intensive Care Unit (NICU), a
specialized intensive care for newborns requiring close monitoring and specialized care
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due to congenital defects, prematurity or other medical conditions.

What is the nurse to patient ratio in the ICU and on the general pediatric floor?
o 1:1 or 1:2 in ICU
o 1:3 or 1:4 on the general pediatric floor

Are there accommodations for parents to stay at the hospital with the child or nearby?
o While your child is in the ICU, we have sleep chairs at the bedside so parents can be with
their child 24/7 if they choose. In addition, there is a dedicated waiting room for the
pediatric surgical heart unit. Once your child is transferred out of intensive care to a
private room on the general pediatric floor, both parents or two adults may stay the
night, utilizing the sofa bed and sleeper chair. There are also showers and bathrooms in
each patient room on the general pediatric floor. Families who live more than 10 miles
from Advocate Children’s Hospital also have the opportunity to stay at the Ronald
McDonald House across the street from the hospital. This requires a referral from a social
worker and is available on a first come, first serve basis. Contact the Pediatric Cardiac
Surgery Office at 708-684-3029 to find out more information.

Do the anesthesiologists only work with infants/children?
o No, but we have a dedicated number of anesthesiologists who work with the cardiac
surgery patients, all of who have received additional training both in pediatrics and
cardiac anesthesia.

Who will be interacting with my child? What will their roles be in my child's care, and how much
experience do they have with this condition?
o Many health care professionals from a variety of fields will be interacting with your child
during their stay at Advocate Children’s Hospital. This interdisciplinary team includes
cardiac surgeons, cardiac intensivists, nurse practitioners and other advanced practice
nurses, physician assistants, respiratory therapists, occupational therapists,
speech/feeding therapists, physical therapists, dieticians, social workers, chaplains, child
life specialists, cardiology/cardiac surgery / intensive care fellows in training.
Physicians and advanced practice nurses from other subspecialties may be consulted as
needed.

Who will be in charge of my child's care throughout the length of his/her stay?
o Preoperatively, the neonatologists and cardiologists will coordinate care.
Postoperatively, the cardiac intensivist and cardiac surgeon will coordinate and direct the
care.

What role will we have in the decision-making process during our child's hospitalization?
o Parents are a key part of the team caring for your child. Parents are encouraged to be
present for twice daily formal rounds and to bring all concerns to a member of the
intensive care team. Multidisciplinary meetings with families of children who are
hospitalized for more than 7-10 days are commonly arranged by the ICU cardiovascular
team and can be requested by parents at any time.

Who will be our contact person if we have questions or concerns while our child is in the
hospital? How do we contact him or her?
o The pediatric surgical heart unit team will round on your child three times a day. Parents
are encouraged to participate in rounds if they are available. Various members of the
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team will be checking on your child throughout the day. There is a cardiac intensivist in
the hospital 24/7 who is available for all concerns, as well as the nursing management
team of the PSHU and general pediatric floor.

Is Physical Therapy (PT) or Occupational Therapy (OT) and feeding help available by those
experienced with babies with heart defects?
o Yes, they are a very important part of our team. They have demonstrated competency
and commitment to the care of complex patients with congenital heart disease. They
attend our multidisciplinary rounds and are updated regularly.

At what point is there a nutritionist available to discuss home feedings?
o A registered dietician is involved in every patient’s care beginning in the ICU and
continuing to manage your child’s nutritional needs on the general pediatric floor. They
round with the two at least twice a week and are available for consultation 24/7.

Is there a social worker who can help us with housing, tours of the hospital, sibling programs,
etc?
o Our dedicated social worker is available for housing and other issues, and the cardiac
surgery office will be happy to have her contact you.
o If you would like a tour of the hospital and facilities, contact the Pediatric Cardiac
Surgery Office at 708-684-3029 to make an appointment.
o Child life specialists are available to help prepare siblings for the coming birth of a
sibling as well as prepare them of what to expect in a sibling that is sick in a hospital.

Will there be any follow up for my child in terms of brain development?
o We recognize that children born with complex congenital heart disease are at risk of have
neurodevelopmental delays. We will partner with the family and follow these children
longitudinally over time to screen for any motor or cognitive deficits. If there are
concerns for delays, we will work with local community resources to get therapies in
place earlier that later.

What other services do you provide, such as child life and music therapy?
o Our child life program is a very strong and thriving department that offers a wide range
of services to our patients and their famies. This includes music therapy, art therapy, and
pet therapy to name a few.

Are there any support networks or groups you can refer me to?
o Mended Little Hearts
o Parent to parent support
o Sisters by Heart/Linked by Heart for HLHS families

Who do I speak to about insurance coverage, financial assistance and/or Medicaid assistance?
o We have a dedicated cardiac social worker who is available to discuss these issues.

Is it safe for my child to attend daycare once home from the hospital?
o We encourage you to keep your child out of daycare for four weeks following surgery, as
he or she will be more susceptible to infection. If the child is in home care with a small
number of other children, 4 weeks may not be necessary.
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
Does the hospital participate in a pediatric research projects, including sponsored clinical trials
and investigator-initiated research?
o Advocate Children's Hospital has strong pediatric cardiology and cardiovascular surgery
clinical research program. We are focused on the latest care of children and young adults
with congenital and acquired heart disease. Advocate Children’s Hospital have been
involved in physician initiated study, clinical trials and has been a center for research
related to new cardiac devices for children, pharmaceutical, cardiac pathology and
molecular biology, and advances in cardiac echo imaging.

Will Home Health care be available for my child if needed?
o Yes. Home Health (RN visits and medical equipment) will be arranged by the cardiac
social worker before you are discharged from the hospital.
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