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Thriving in the Midst of Chaos: Parenting With Special Needs Kids


Feb 4, 2021

Episode 75: Hypoplastic Left Heart Syndrome With Guests Dr. Thomas Glenn and Tawanna Nishibayashi

In this episode, we discuss hypoplastic left heart syndrome. Dr. Thomas Glenn discussed that the condition is a congenital heart disease where the left side of the heart is underdeveloped. Nowadays, a diagnosis is done prenatally, but once kids are born, the diagnosis is confirmed via an echocardiogram. Doctors also test the saturation around the baby’s body before they go home to make sure the baby is ok. If the condition is not diagnosed prenatally, visible symptoms might include blue color to the child, changing breathing pattern, fast breathing, the child having a difficult time breathing, perfusion being different, mottling of extremities, and the child not feeding initially. This is a condition that can only be treated at 10-15 centers around the country, successfully, so it important to catch this condition early.

The main treatments are surgery, transplant, or palliative care. The three main surgeries include the Norwood, Glenn, and Fontan. The goal of these surgeries is to get the right side of the heart to do what the left side would have done and then to redirect the blood from the heart to the lungs. During the early periods, these kids are followed every week and have echocardiograms at least once a week. Medications are always needed. Parents need to be careful about the exposure the children have to other people during the interstage phase.

Dr. Glenn shared his personal experienced with Hypoplastic left heart syndrome. Tawanna Nishibayashi’s daughter Avery was also born with that condition. Tawanna shares Avery’s story. Avery had a complex case, fraught with complications, including needing a Berlin heart and a heart transplant with rejection, and injury to other bodily organs.  

 

Some possible complications of the condition and surgery include involvement of the liver, kidney, and needing NG tubes for feeding. There is a possible need for a heart and liver transplant in adulthood. A lot of patients have to deal with PTSD, anxiety, and depression. These children may not grow as fast as their peers and may experience developmental delays. Factors contributing to this is frequent anesthesia, lower saturations, abnormal brain development in utero, and spending a lot of time in the hospital.

Tawanna recommends that once you have found out that your child has this condition, take time to process. Begin the morning process early (of a normal pregnancy, baby shower) and the death of normalcy. Process the length of time your child might be in the hospital. Learn the science as much as you can, including treatments, outcomes, mortality, conditions, centers, procedures, surgeons, care teams, follow up, and support. Be an advocate for your child. Develop a relationship with your team. Expect the unexpected and prepare for that as much as you can.

Quality of life is also an issue for children, including ICU psychosis, aspiration, feeding troubles, nausea, and trust issues. Moreover, parents often experience PTSD and CPTSD.

To prepare the children for medical appointments, cluster care, read books with them about the procedure, watch shows about doctors and shots, have the child hold the stethoscope, get their permission, let them know what to expect, bring their favorite things, and maintain a routine.

Be prepared for financial difficulty. Often, one parent is no longer able to work due to helping their child. Sometimes, neither parent can work, in order to care for the child. Treatments, procedures, medical equipment, medications, anything insurance doesn’t cover, outside therapies, hospital stays, home health nurses, parking, food, laundry, and groceries all factor into financial difficulties.

For advocacy, use your voice. Ask a lot of questions. Attend all the rounds. Spend a lot of time with your child. Have someone with your child as often as you can. Keep in touch with your support team, even while you are outpatient.

Being a medical mom can be very challenging, as it is intensive, time consuming, people might not understand, and you have less time for fun things. Expect the unexpected. Roll with the punches. Other coping strategies include hospital relationships, carving out your own quiet time, having a routine, learning to ask what you need, taking time outside of the hospital and get fresh air, yoga, and music therapy.

Links:

Dr. Glenn:

Glenntm3@gmail.com

LinkedIn

Tawanna

Tawanna.nishi@icloud.com

Website

Instagram

LinkedIn 

 

 

Hypoplastic Left Heart Symptoms Facebook group

Heart Camp- Camp Delcorazon

Children’s Heart Foundation

ParentWise

 

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Show Music:

Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)

Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)

Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)

 

Hosted by: Jessica Temple 

 

Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.

Copyright 2021 Jessica Temple