Guest: Mahaley & Ravi Patel

Bereaved NICU Parents

Content warning: death and dying

Death is tragic, but Saachi’s life was not. Bereaved NICU parents Mahaley and Ravi Patel candidly share about their daughter’s complication at birth – meconium aspiration – her death, their grief and how it all reshaped the life they once knew. Their jobs as author and marriage and family therapist (Mahaley), actor and entrepreneur (Ravi), color a partial picture of their lives, but it was Saachi’s entrance into the world, their other children, their marriage and their commitment to transparency that will be a balm to every bereaved parents’ heart.

In this episode, we chat about:

• Mahaley and Ravi Patel share the story of their daughter, Saachi, from pregnancy and birth complications to her five days in the NICU.

• How they navigated the early days of grief following Saachi’s death and how their experience of grief has evolved over time.

• The challenges of supporting their older child through loss while navigating grief as a couple.

• How Saachi’s life inspired Mahaley to write Your NICU Story and shaped their family’s perspective on love, loss, and gratitude.

• Words of encouragement and understanding for bereaved NICU parents learning to carry both love and grief.

Connect with Mahaley & Ravi Patel

Instagram (Mahaley)  |  Instagram (Ravi)  |  Website  |  Book 

About the guest

Mahaley is a licensed marriage and family therapist, certified in perinatal mental health, and trained in EMDR. As a bereaved parent, and a mother by birth and surrogacy, she is no stranger to the complex emotions that one may experience as they navigate their journey to and through parenthood. Mahaley earned her masters from Pepperdine University. She began her journey working in the perinatal space as a postpartum doula before she transitioned to becoming a therapist. In 2023, she and her husband, Ravi, lost their middle daughter, Saachi (SAH-chee), due to meconium aspiration when she was just five days old. 

Emmy-nominated Ravi is most well-known for co-directing and starring in Meet the Patels, a festival darling that became one of the most streamed documentaries of the last ten years, which led to an offer to adapt it into a feature film with Fox Searchlight Pictures. As an actor, Ravi recently completed filming The Off Weeks for Apple with Ben Stiller, Jessica Chastain, and Richard Gere, as well as the fifth season of the Fox series Animal Control (from the creators of Wedding Crashers), for which Ravi is a lead alongside Joel McHale. He is known for his roles in Master of None, It’s Always Sunny in Philadelphia, Scrubs, Grey’s Anatomy, Children’s Hospital and Transformers. Formerly an investment banker and cofounder of a poker company, Ravi most recently co-founded This Saves Lives alongside actors Todd Grinnell, Kristen Bell, and Ryan Devlin. Acquired by Good/Upworthy, the company donates a meal packet for every snack they sell. Ravi’s hobbies include sports and reading fiction, psychology, and wellness. He and his wife, Mahaley have four children and have been married 14 years.

Listen & Subscribe

Apple Podcasts

Spotify

Connect with us!

Connect with host Kathryn Whitaker

Instagram  |  Facebook  |  Website

Connect with Hand to Hold

Instagram  |  Facebook  |  LinkedIn

The post Episode 163: Death is a Tragedy, but Their Daughter’s Life Was Not appeared first on Hand to Hold.

Guest: Susan Hwang, MD, MPH, PhD

Lula O. Lubchenco Chair in Neonatal-Perinatal Medicine
University of Colorado School of Medicine
Professor of Pediatrics
Neonatologist

In this episode:

• Explain the difference between Sudden Unexpected Infant Death (SUID) and Sudden Infant Death Syndrome (SIDS)
• Identify at least three evidence-based safe sleep recommendations for infants
• Explain factors that may increase vulnerability to sleep-related death among NICU graduates

CLAIM CEU

About Dr. Hwang

Susan Hwang, MD MPH PhD is the Lula O. Lubchenco Chair in Neonatal-Perinatal Medicine at the University of Colorado School of Medicine.  Dr. Hwang is Professor of Pediatrics, Neonatologist, health services researcher, and perinatal quality improvement expert. She leads the Colorado Hospitals Substance Exposed Newborn Quality Improvement Collaborative (CHoSEN QIC) and the Data-driven Engagement of Families to Improve the NICU Experience (DEEFINE) QIC. She previously led the Massachusetts Hospitals Safe Infant Sleep Quality Improvement Collaborative. Dr. Hwang received her medical degree from SUNY Downstate, MPH from the Harvard School of Public Health, and PhD from the University of Colorado Graduate School. She completed her pediatric residency and chief residency at New York University and her neonatal fellowship at Boston Children’s Hospital. Dr. Hwang is an NIH-funded investigator whose research interest is in the transition of high-risk infants from hospital to home, with particular focus on safe infant sleep practices to reduce sudden unexpected infant death.  

Listen & Subscribe

Apple Podcasts

Spotify

Disclosures

This podcast episode is approved by the California Board of Registered Nurses, Provider Number 15417, for up to 1 contact hour.

The post Episode 56: Preventing SUID in NICU Graduates appeared first on Hand to Hold.

Guest: Susan Hwang, MD MPH PhD

Lula O. Lubchenco Chair in Neonatal-Perinatal Medicine, University of Colorado School of Medicine

Trigger warning: death and dying

Exhaustion and sleep deprivation is a part of any parent’s story. In this episode, we visit with professor, neonatologist, researcher and perinatal expert, Dr. Susan Hwang about SIDS (Sudden Infant Death Syndrome), SUID (Sudden Unexpected Infant Death) and safe sleep practices. We also explore why NICU graduates may have unique sleep-related risks, offer practical guidance on safe sleep practices, and address the challenges of translating what happens in the NICU to what families do at home. A bonus? We break down what an exhaustion plan is and how you can make it work for you and your baby. 

In this episode, we chat about:

• The difference between SIDS and SUID and what families need to understand about each
• Why NICU graduates may face unique sleep-related risks, particularly during the transition home
• Current evidence-based safe sleep recommendations and how families can put them into practice
• Why safe sleep may look different in the NICU—and how to bridge the gap between hospital positioning and safe sleep at home
• Common sleep safety misconceptions, plus how an exhaustion plan can help parents prepare for moments when sleep deprivation makes safe choices harder

Connect with Dr. Huang

 LinkedIn  |  Website 

About the guest

Susan Hwang, MD MPH PhD is the Lula O. Lubchenco Chair in Neonatal-Perinatal Medicine at the University of Colorado School of Medicine.  Dr. Hwang is Professor of Pediatrics, Neonatologist, health services researcher, and perinatal quality improvement expert. She leads the Colorado Hospitals Substance Exposed Newborn Quality Improvement Collaborative (CHoSEN QIC) and the Data-driven Engagement of Families to Improve the NICU Experience (DEEFINE) QIC. She previously led the Massachusetts Hospitals Safe Infant Sleep Quality Improvement Collaborative. Dr. Hwang received her medical degree from SUNY Downstate, MPH from the Harvard School of Public Health, and PhD from the University of Colorado Graduate School. She completed her pediatric residency and chief residency at New York University and her neonatal fellowship at Boston Children’s Hospital. Dr. Hwang is an NIH-funded investigator whose research interest is in the transition of high-risk infants from hospital to home, with particular focus on safe infant sleep practices to reduce sudden unexpected infant death.  

Listen & Subscribe

Apple Podcasts

Spotify

Connect with us!

Connect with host Kathryn Whitaker

Instagram  |  Facebook  |  Website

Connect with Hand to Hold

Instagram  |  Facebook  |  LinkedIn

The post Episode 162: Safe Sleep, SIDS & Exhaustion Plans appeared first on Hand to Hold.

Guests: Keishera & Greg Joubert

NICU parents

The possible outcomes for Keishera and Greg Joubert’s baby, Cassian, with Congenital High Airway Obstruction Syndrome (CHAOS) were grim. Doctors tried one option and failed, so in an act of faith surgeons tried a highly risky partial delivery to address the airway and then hoped for a chance at life as they awaited the second delivery, weeks later. This episode is as remarkable as the Joubert’s and their son. If you need a dose of hope from parents who have “been there, done that,” this one’s for you.

In this episode, we chat about:

• Learning Cassian had Congenital High Airway Obstruction Syndrome (CHAOS) and facing a devastating prognosis before he was even born
• The high-risk procedure that allowed doctors to address his airway during a partial delivery — and gave him a chance at survival
• The emotional moment doctors took Cassian’s first photo, knowing his birth story was unlike anything his parents had imagined
• The challenges of Cassian’s NICU stay, the attention his remarkable story received and what his parents learned along the way
• Why Cassian now celebrates two birthdays — and the hope his journey offers families facing congenital conditions and long NICU stays

About the guest

Greg and Keishera Joubert navigate the complexities of medical parenthood while raising their two boys. Their younger son, Cassian, was diagnosed with Congenital High Airway Obstruction Syndrome (CHAOS). Doctors performed a rare and novel fetal surgery allowing him to be born “twice.” Their family journey has included the support of family and friends, NICU training, faith and trial, and managing the emotions of the many events along the way. 

Listen & Subscribe

Apple Podcasts

Spotify

Connect with us!

Connect with host Kathryn Whitaker

Instagram  |  Facebook  |  Website

Connect with Hand to Hold

Instagram  |  Facebook  |  LinkedIn

The post Episode 161: Born Twice For a Chance at Life appeared first on Hand to Hold.

Guest: Tori Meskin, MSN, RNC-NIC

NICU Nurse

In this episode:

• Identify primary drivers of burnout specific to NICU nursing.
• Differentiate between compassion fatigue, secondary traumatic stress, and moral distress.
• Describe practical boundary-setting strategies in high-acuity environments.
• Recognize the role of mentorship and peer networks in nurse retention.
• Develop at least one actionable strategy to improve personal or unit-level well-being.

CLAIM CEU

About Nurse Tori

Nurse Tori is Tori Meskin MSN RNC-NIC, a NICU (Neonatal Intensive Care Unit) nurse, content creator, and co-founder of NICUity. She holds dual Bachelor’s degrees in Nursing and Child Development from the University of Arizona and a Master’s in Nursing Leadership. Meskin has extensive experience in specialized neonatal and pediatric critical care, having worked in various children’s hospitals, university hospitals, and trauma centers since 2013. She is known for sharing real-life insights into NICU nursing, career growth, and lifestyle balance through her blog, social media, and other platforms, aiming to support and empower other nurses. 

Connect with Nurse Tori

Instagram  |  Facebook  |  TikTok  |  YouTube  |  Podcast  |  Website

Listen & Subscribe

Apple Podcasts

Spotify

Disclosures

This podcast episode is approved by the California Board of Registered Nurses, Provider Number 15417, for up to 1 contact hour.

The post Episode 55: Running on Empty: Preventing NICU Nurse Burnout appeared first on Hand to Hold.

Guest: Dr. Gal Barbut, Neonatologist

He loves babies, AND he’s got dad jokes. While the NICU can be an intense, and often serious, place, neonatologist Dr. Gal Barbut believes that well-timed levity allows doctors, nurses and NICU professionals to better connect with NICU families. When we share the totality of our humanness – the highs and the lows – we can develop a deeper connection. It’s that connection we explore in this week’s episode. This one might make you laugh, and cry, as you feel seen in your humanity.

In this episode, we chat about:

• How humor and levity can help NICU professionals build authentic connections with families
• Balancing the emotional weight of neonatology with life outside the NICU
• Healthy ways for NICU parents and caregivers to cope during difficult days
• How social media is changing the way families understand medicine and interact with healthcare providers
• Where parents can turn for trustworthy, accurate information about their baby’s care

Connect with Dr. Gal

 Instagram  |  TikTok 

About the guest

Dr. Gal, known online as GalTheBabyDoc, is a neonatologist and pediatrician who cares for critically ill and premature newborns and their families at a large academic medical center. Outside the hospital, he’s a husband, dad to three boys, endurance athlete, musician, and content creator who uses education, humor, and stories from life in and outside the NICU to make medicine feel a little more human. His approach is grounded in the belief that caring for a baby also means caring for the family around them—and that even in some of life’s hardest moments, there can still be room for connection, laughter, and joy.

Listen & Subscribe

Apple Podcasts

Spotify

Connect with us!

Connect with host Kathryn Whitaker

Instagram  |  Facebook  |  Website

Connect with Hand to Hold

Instagram  |  Facebook  |  LinkedIn

The post Episode 160: Is It OK to Laugh in the NICU? appeared first on Hand to Hold.

This article is sponsored by Prolacta Bioscience.

When Leslie Hoops was induced at 33 weeks due to severe preeclampsia, she could only think at that moment whether her son would be delivered healthy. She wasn’t thinking about what would happen next, or what decisions would need to be made. But as soon as her son was born, those questions and decisions came quickly.

Leslie’s son was born with Duodenal Atresia, a congenital condition where a blockage occurs at the first part of the small intestine, known as the duodenum. Duodenal Atresia is usually detected during a prenatal ultrasound when excess amniotic fluid and a “double bubble” appearance indicate fluid in the stomach and duodenum.

Only a week after his diagnosis, Leslie unexpectedly delivered her son due to her worsening preeclampsia. Now she was being asked to process unfamiliar medical information and make decisions about their son’s care – regarding both the Duodenal Atresia and his prematurity. And like many NICU parents, Leslie and her partner were navigating these conversations while recovering from an unexpected delivery and coping with the fear and uncertainty of having a critically ill newborn.

This is where informed consent becomes especially important. Informed consent is the process in which a healthcare provider educates a patient about the risks, benefits, and alternatives of a proposed procedure or treatment.

What Does Informed Consent Mean?

Informed consent is more than signing a form or giving permission for a procedure. The concept of informed consent involves three key components:

Disclosure: The provider must give the information in clear, layperson terms. This information needs to include:

• Diagnosis
• The proposed treatment
• The potential risks and benefits
• Any alternative treatment options and their risks and benefits
• The consequences if the patient chooses not to undergo the treatment 
• Providers also need to give families the opportunity to ask questions and participate in conversations and decisions about their baby’s care 

Capacity: The patient must have the mental ability to understand the information and make a rational decision.

Voluntariness: The decision must be made freely, without manipulation, coercion, or undue influence.

Informed consent helps parents feel informed, supported, and included in decisions about their baby’s care, an essential part of the NICU experience.

What Informed Consent Looks Like in the NICU

In the beginning, Leslie admits she was afraid to ask questions. She genuinely didn’t know where to begin. She was swirling in a haze of exhaustion from postpartum recovery, pumping, and still reeling from the fear and anxiety of her son’s early delivery. It was difficult to process any kind of complex information. “It felt like my brain was in slow motion while everyone was rushing around me,” she said.

There were many times Leslie felt as if she was being asked to make big medical decisions before she fully understood what was happening. In those times, she remembers the NICU staff taking great care to walk through complex information and help her understand the decisions before her. 

Her neonatologist drew her a picture to show how an NG tube would work to “feed” her son’s duodenum so they could rule out pyloric stenosis. He illustrated the problem they were trying to solve and how the tube could help. 

And whenever Leslie asked for something to be explained again, the staff was patient and kind as they continued to make sure she understood.

Ultimately, the path of informed consent always started with having a conversation, followed by Leslie asking any followup questions. She would then read through the consent documents to make sure she fully understood any procedure before agreeing. Leslie gives credit to the medical staff for ensuring she was an active participant in her son’s daily care and in the decisions that affected his progress. 

Understanding Your Baby’s NICU Care Through Research

Leslie didn’t fully understand what Duodenal Atresia was before her son’s diagnosis. Now she was trying to understand an unfamiliar condition while also processing information about procedures, risks, and decisions related to her son’s care. 

“I did my own research because there were risks and procedures and words I didn’t understand,” she said. 

As her son’s NICU stay progressed, Leslie began learning an entirely new medical language  – terms like “Replogle tube,” a tube used to remove air and fluid from the upper digestive tract, and phrases like “to gravity,” meaning active suction is turned off while the tube remains in place to allow fluid to drain naturally.

Understanding this language was more than a matter of becoming familiar with the NICU. It helped Leslie better understand her son’s care, ask informed questions, and participate more fully in decisions. Her experience also illustrates an important challenge of informed consent in the NICU: Parents may be asked to consider complex procedures, risks, and treatment options while they are still learning the language being used to explain them.

Questions to Ask Before Giving Informed Consent

Leslie had three primary questions that helped her feel empowered when giving consent: 

1. “Will this option affect my son long term?” 
2. “Are there any alternatives?”
3. “Why is this option the best?” 

These questions helped give Leslie direction as she dived deeper in being informed about her son’s medical decisions. Overall, Leslie felt her decisions were respected. 

Informed Consent in the NICU: Leslie’s Advice for Parents

Keep asking questions.

Whenever Leslie didn’t understand something, she didn’t hesitate to ask. And when she asked for something to be explained again, the staff was patient and kind as they continued to make sure she understood.

It’s okay to press pause.

When she was being asked to make big medical decisions before fully understanding what was happening, Leslie would ask, “May I take a moment?” This allowed her more time to think and process the situation at hand. “I had to trust myself that I was making the best choice for my son,” she said.

Advocate for yourself and your baby.

Once you have asked questions, gathered the information you need, and understand the available options, you can make the decision you feel is best for your child. “It was my job to make sure his little voice was heard,” Leslie said.

NICU parents may not always feel prepared for the complex decisions placed before them. They may be learning unfamiliar medical terms while recovering from birth, coping with uncertainty, and trying to understand what their baby needs. But parents should feel informed, included, and supported throughout the decision-making process.

Informed consent does not mean parents have to become medical experts or navigate difficult decisions alone. It means receiving clear information, having opportunities to ask questions, understanding the available options, and being given the time and support needed to participate meaningfully in decisions about their baby’s care.

The post Informed Consent in the NICU: What It Means and How to Advocate appeared first on Hand to Hold.

The post Episode 159: Little Fighter: From 1% to the NFL appeared first on Hand to Hold.

The post Episode 158: Season 13: In Their Own Words appeared first on Hand to Hold.

The post Episode 54: More Than Milk: Supporting NICU Mothers with Compassion and Equity appeared first on Hand to Hold.