Optimizing Neurodevelopmental Outcomes in NICU Patients with Occupational Therapy – Part II

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Introduction

If you are a current or former NICU parent, you will want to listen to this episode. There are so many pieces of information you receive as a NICU parent while your baby is in the NICU and it continues once you bring your baby home. Listen to hear great recommendations on how to best advocate and help your child while they are in the NICU and especially once they are home! 

For our 17th podcast episode, I continued my discussion with Tracey Kondrasuk-Branker a certified Neonatal Occupational Therapist who has over 22 years of experience with children from birth to 3 years. Since we had so much to discuss, we split our discussion into 2 separate episodes. If you have not already listened to episode 16, Optimizing Neurodevelopmental Outcomes in NICU Patients with Occupational Therapy Part I, I strongly encourage you to go back and listen. 

In this episode, we discussed why Tracey developed her early developmental online consulting company and why she felt it was so important to help bridge the gap for NICU families between their time in the NICU and their transition to home. We discuss the common gaps in care between an infant’s discharge home from the NICU to their first early Intervention evaluation as well as some of the common fears and feelings of uncertainty NICU parents may experience once they bring their NICU infants home. 

We discuss the importance of finding appropriate support groups as well as other local, state and national programs that will ensure your child receives the best care possible and that you as a parent feel supported. We also review how imperative it is that if you as a parent feel that there is something going on with your child that is not being addressed properly, to never stop advocating for them and the steps you can take to get the help they need!

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Optimizing Neurodevelopmental Outcomes in NICU Patients with Occupational Therapy – Part II

Episode 17

 

Meet Our Guest, Tracey Kondrasuk-Brander

Tracey lives in York, Pennsylvania and has 3 children. She is a Certified Neonatal and Early Intervention Occupational Therapist, Sleep Consultant and Massage Therapist.  She has worked with premature infants and infants from birth to 3 years of age for over 22 years. She is the owner of Early Developmental Therapy Consultants and SleepTimeOT.

After her initial career left her questioning her long-term goals, she went back to school and became an occupational therapist. After 2 years in long-term care, she transitioned to acute care and eventually the NICU. She took several courses and achieved certifications in positioning, infant massage, NDT (neurodevelopmental therapy), became a feeding specialist, then a certified Neonatal Therapist. She avidly worked to help build the therapy program in the Level III NICU where she worked for 23 years.

The need to bridge the gap in neonatal care between the NICU and home

Tracey decided to start a developmental therapy consultation company to help bridge the gap between the time infants are in the NICU and once they are discharged home. She and her colleagues began to notice that the importance of long-term neurodevelopment outcomes was not being actively addressed as often as the medical components of the NICU. The amount of time set aside for therapy for NICU infants and for parental education has been more limited for therapists.

Additionally, she noticed that there was a large gap of time between the NICU infant’s discharge and their first Early Intervention (EI) evaluation, sometimes up to 4 months. Sadly, with COVID, many children are not being seen at all or have had major delays in getting services.

She developed her consultation company to specifically help the transition for NICU babies from their time in the NICU to home. She offers different consultation options for parents based on the need as well as support and resources to minimize the gap often seen with care.

  

Parents overwhelm once NICU infant is discharged

While a baby is in the NICU, parents become very focused on the medical components and what their infant needs to accomplish so they can be discharged home. Unfortunately, many parents do not realize the daily support system they have while there infant is in the NICU will be suddenly gone once their infant is discharged home.

For me personally, I have very limited memories of the first few months and even years once William came home from the NICU. I was not concerned regarding the medical care our son needed including the oxygen, oxygen saturation monitor or apnea monitor, but I later learned that I was suffering from PTSD and I was lonely.

Once home with their infant, parents often feel isolated, along, inadequate, and scared. They become very anxious and overwhelmed and feel as though they did not receive enough education while their infant was in the NICU.

Once home, many parents speak openly about the anxiety they experienced once they are home with their NICU infant. The stress they endure is something that most parents do not feel prepared for and did not anticipate. Parents become even more anxious if they have limited resources available or if the follow-up appointments are difficult to obtain.

Why are follow-up appointments and evaluations so vital for former NICU patients?

Outpatient follow-up appointments as well as early intervention evaluations and services are crucial to NICU patients and their long-term developmental outcomes. Tracey feels that every NICU patient should be followed as an outpatient, including late preterm infants. Most areas refer their NICU infants < 32 weeks to a follow-up neurodevelopmental clinic. It is imperative that the parents keep the appointment and ensure they make it to every one of them. A preterm infant’s brain development continues to develop and preterm infants need to be monitored at least every 6 months.

Any issues that are identified in children result in better outcomes if they are addressed while the infant is young and their brain is more elastic. Preterm infants will be more likely to reach their developmental milestones and “catch up” if the issues are addressed in a timely manner.

NICU Support Groups

NICU support groups are valuable to NICU parents. They are helpful so parents do not feel alone or judged. They are a great place to ask questions as well. Tracey has a support group on Facebook called NICU-Therapy Connection with Tracey where parents can ask questions and NICU professionals help offer advice. As a NNP and former NICU Mama, we developed this website and our Facebook Group and Instagram groups Empowering NICU Parents, to offer education, support, and to help to empower NICU parents.

We caution you to be careful where you are getting support and/or advice and recommend particular groups. Here are some trustworthy websites that offer support.

  

Importance of Parent Advocacy

As your baby’s parent, you are their primary advocate. Not only must you ensure they go to all of their follow-up appointments, but you know your children the best! If you suspect there is an issue that you feel is not being adequately addressed, you must continue to pursue it. You may run into barriers, but do not let that stop you if you genuinely feel that there is something wrong.

It is always better to identify and work through issues while your child is still young. It is more difficult to address underlying issues once your child is older. If you do have concerns that are not being addressed by your pediatrician or in therapy sessions, depending on the issue, first check your insurance, then pursue a specialist or consider networking with other professionals that may be able to help!

Closing

Whether your child is currently in the NICU or they have already been discharged home, their follow-up appointments with early intervention are vital to their long-term neurodevelopmental outcomes. Appropriate follow-up also helps NICU infants achieve all of their developmental milestones. 

The key takeaways from episode 17, are to ensure your child is followed in a timely manner by early intervention. NICU infants need to attend all of their follow-up appointments to give them the best opportunities available. It is key to find support as a NICU parent through professionals, support groups, or programs not only for your child, but also for yourself. And never doubt the importance of continuously advocating for your child! Do not stop fighting for your child especially if you feel that something is not quite right and it is not being addressed. You know your child the very best and the issues will be more difficult to address as your child becomes older, so do not doubt yourself, and continue to pursue avenues to get your child the help  they need!

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Remember, once empowered with knowledge, you have the ability to change the course.