Tina Magallon

[Betsy Pilon @BetsyPilon]

@tinasantos_7 is the heartbeat of Hope for HIE.

[Tina Magallon @tinasantos_7]

@BetsyPilon 🫶🏼

[Hope for HIE ☀️ @HopeforHIE]

Our Hospital Ambassador at Seattle Children's hosts this virtual event on self-care for HIE parents/caregivers.

🗓️ Fri, 11/21
🕚 7PM – 8PM PT
🎦 Zoom

Features mindfulness exercise and journal prompts. Share as you feel comfortable. Bring a pen, journal, etc.

⬇️ Register below!

[Hope for HIE ☀️ @HopeforHIE]

Our Hospital Ambassador at Seattle Children's hosts this meet-up for local HIE families at a drive-through holiday light display.

🗓️ Sun, 12/7
🕚 6PM PT
📍 Spanaway Park

A safe way to enjoy some cold-weather family fun!

⬇️ Register below!

[Tina Magallon @tinasantos_7]

“Parenting is strenuous, and all of us will face situations in life that feel like they will destroy us.”

#newblog #bleedingblack

https://t.co/WokMs0hhp3

[Tina Magallon @tinasantos_7]

It’s Olivia’s first fundraiser :) and there’s 2 days left to shop! Click the link below to check out all the goodies.

https://t.co/ehfLaOFwSc

[Hope for HIE ☀️ @HopeforHIE]

Join Hope for HIE on Thursday, September 18, at 8:00 PM ET for a virtual support group focused on Couples Coping with #HIE — open to parents and legal guardians seeking additional support and guidance.

🔗 Register: https://t.co/L0DED2b9ZN

#HIESupport #MedicalParenting

[Tina Magallon @tinasantos_7]

Disabled people are 4-10 times more likely to be sexually abused than their no disabled peers. Let that sink in & then tell me if I’m still being overbearing. #EducateYourself #VulnerablePopulation #MamaBear #OurKidsMatter

[Hope for HIE ☀️ @HopeforHIE]

Join #HopeforHIE on Aug 19 at 12 PM ET to explore meaningful ways to #getinvolved. Hear from our #PeerSupportMentors & #HIE #HospitalAmbassadors as they share how they turned personal experience into #peersupport.

🔗 Register: https://t.co/TKTnnUz34U

#HIEsupport #HopeinAction

[Hope for HIE ☀️ @HopeforHIE]

Here's your weekly reminder:
- HIE families deserve a confirmed diagnosis of HIE for their children, made in the #NICU, not reading it in the discharge summary
- HIE patient-family stakeholders should be included in any policymaking for #neonatology, and especially when it directly impacts HIE
- HIE children across the wide range of outcomes have "good outcomes". All of our community stories are "good stories".
- HIE needs patient-centered research (not just adding us as a checkmark), validated biomarkers for #clinicaltrials, and long-term follow up guidelines

#HopeforHIE #NICU #NeoTwitter #NeuroTwitter

[Tina Magallon @tinasantos_7]

✨🤍The Caregiving Grandma🤍✨

Same story, new perspective.

https://t.co/Bkkkip0wWp

[Hope for HIE ☀️ @HopeforHIE]

Trauma-informed care in the NICU — let’s talk about it.

Last night, I had a longtime HIE mom friend message me and send me a video she came across on social media that she found incredibly hurtful.

“Hey — can you respond to this video on Hope’s platform? These parents are traumatized. It takes a lot to offend me most days but that hurts!”

The video itself wasn’t terrible. Maybe not in the best taste, but it was the comments piling on parents that was most upsetting:

“Can you believe parents in the midst of their baby’s intensive care asking…

- When they will be able to hold their baby
- How much their baby weighed at birth
- When they will be able to bring them home
- When they will be able to dress them in cute baby clothes
- If their eyes are blue or brown
- If there was something they did to cause their baby’s issues”

…. you know, typical things parents want to know about their baby, things they dreamed of, little and normal things.

When parents responded to these comments stating they were hurtful, the NICU nurses commenting said things like:

- Don’t take things so seriously
- We can vent about it
- Some things are really stupid parents ask

….and others I won’t repeat on social media.

So, I made a response video per the request of my friend and other HIE parents and shared links for trauma-informed care training, video resources and Mary Couglin’s Caring Essentials Collaborative, LLC resources.

The NICU nurse ultimately took down the video, and apologized for the unintended harm.

This is my takeaway:

Distrust in the medical system is at an all-time high. Burnout in medical teams is at an all-time high. This is a combination to perpetuate systemic failures of care and parental trauma.

We have to come together and work on these issues together.

Trauma-informed care as standard of care is a good start.

- @BetsyPilon, Executive Director

#HopeforHIE #TraumaInformedCare #NICU #NICUnurse #HIE #PTSD #BirthTrauma #HIEawareness #HypoxicIschemicEncephalopathy #TIC

[Tina Magallon @tinasantos_7]

Weather 😎 is looking good this year for Hustle for Hope. I’m so excited to connect & collaborate!! #hopeforhie #hopeforolivia

[Tina Magallon @tinasantos_7]

@BetsyPilon @HopeforHIE @PASMeeting @NewbornBrains @AAPneonatal @nicupodcast @FccTaskforce 😍😍

[Betsy Pilon @BetsyPilon]

Day 1 of #HIEawarenessmonth -- I loved to see families feel seen, heard and validated, connected, educated and empowered.
I loved speaking with powerhouse women physicians like @KrisaVan & @DrMBabyNeuroFL.
#HopeinAction - here we go.
#NICU #NeoTwitter

[Tina Magallon @tinasantos_7]

Fate, faith, or choice?

Sharing my life events & witnessing the evolution of who I am…

#newblogpost

https://t.co/erhpAHw3d9

[Tina Magallon @tinasantos_7]

@TracyDixonSalaz She will never be forgotten. We love you guys 💗

[Tina Magallon @tinasantos_7]

💜💚My mind can’t handle the amount of recent deaths this community has suffered. Each day I kiss my daughter & I’m grateful for another day. We need help, we need research, we need cures! You can help by donating to https://t.co/sA956ho87y

[Tina Magallon @tinasantos_7]

Register to Volunteer Here ⬇️

https://t.co/LwJRXBO7MO

[Ashley Osborne @drashleyosborne]

🚨 Medicaid saves NICU lives! 🚨
Nearly half of births rely on Medicaid—including most preemies & sick newborns. Cutting it means less access, worse outcomes & higher costs.
These babies can’t advocate for themselves—but we can.
📢 Call Congress & demand they #ProtectMedicaid!