How to Advocate for Your Baby and Yourself in the Hospital

I recently spoke to Julie & Carson about their daughter, Ellie. She was born with Progeria and sadly passed away after a short life. To read their full story, click here or to watch the video interview, click here.

What Does it Mean to Advocate for Your Baby?

When your baby is in the hospital, especially with a serious or terminal diagnosis, it can feel like you have little control. Medical teams move quickly, decisions are made in fast-paced environments, and as a parent, you may feel overwhelmed or even powerless. But one of the most important things you can do is advocate for your baby and yourself.

Advocacy means speaking up, asking questions, and ensuring that your child receives the best care possible while also making sure your own emotional and physical needs are met. It is an act of love and protection, and though it can be challenging, it can make a world of difference in how you and your baby navigate this journey.

Why Advocacy Matters

Doctors, nurses, and specialists are highly trained professionals, but you know your baby better than anyone. You are the constant in your child’s care, and your voice matters. Advocacy ensures that your concerns are heard, your baby’s comfort is prioritised, and that you are an active part of the medical decision-making process.

Julie and Carson, parents of baby Ellie, learned this firsthand. They faced a rare and severe form of Progeria that had only been diagnosed in two other babies before. They quickly realised that speaking up, pushing for answers, and advocating for Ellie’s comfort would be the best way to support her during her short but meaningful life. (Watch the full interview at the bottom of the page.)

How to Advocate for Your Baby’s Medical Care

1. Ask Questions, Even If They Feel Repetitive

  • If a test was ordered, ask when the results will be back.
  • If a treatment is suggested, ask about risks, benefits, and alternatives.
  • If something doesn’t feel right, ask for an explanation.

Julie and Carson were initially told it could take 3-5 months to receive Ellie’s genetic test results, but they pushed for updates daily. By advocating for faster processing, they received the results in three weeks instead of the estimated 3-5 months. This gave them clarity and allowed them to focus on making Ellie’s remaining time as meaningful as possible.

2. Push for Second Opinions and Specialist Involvement

  • If you feel your baby’s condition isn’t being fully understood, request additional specialists.
  • Ask if a more advanced hospital or research facility could provide better insight.
  • If something is dismissed as “not a concern,” but you feel otherwise, keep pushing.

3. Keep a Log of Symptoms, Medications, and Treatments

  • Write down what doctors tell you in a notebook or on your phone.
  • Track changes in your baby’s condition so you can notice patterns.
  • Use this information to advocate for additional tests or treatment adjustments.

Advocating for Your Baby’s Comfort & Quality of Life

1. Request Adjustments for Comfort

  • Ask nurses to cluster their checks around your baby’s sleep and feeding schedule to avoid unnecessary disruptions.
  • Speak up if a procedure is causing distress—ask if there are gentler alternatives.
  • Request familiar items like blankets, toys, or sounds from home to create a more comforting environment.

2. Prioritise Meaningful Time with Your Baby

  • Julie and Carson realised that constant interruptions from medical teams made it difficult to fully experience their time with Ellie. They requested that non-urgent procedures and visits be minimised so they could have more uninterrupted moments together.
  • If a medical team member isn’t essential at a certain time, ask if they can come later.

How to Advocate for Yourself as a Parent

1. Don’t Be Afraid to Take Breaks

  • It’s okay to step out, rest, and eat. You can’t pour from an empty cup.
  • If possible, have a trusted family member or friend rotate shifts with you.
  • A well-rested parent can make clearer decisions and advocate more effectively.

2. Lean on Your Support System

  • Ask for help from family, friends, or hospital social workers.
  • Join online or in-person support groups for parents facing similar challenges.
  • Talking to others who understand your journey can provide strength and perspective.

3. Set Boundaries & Make Your Needs Known

  • If you need quiet time, let hospital staff and visitors know.
  • If people offer to help, give them specific tasks (bringing meals, running errands, etc.).
  • It’s okay to say no to conversations or interactions that feel draining.

What to Do If You Feel Overlooked

If you ever feel ignored or dismissed, remember: you have the right to advocate for better care.

  • Speak to a Patient Advocate – Many hospitals have professionals who mediate between families and medical teams.
  • Escalate Concerns to Higher Authorities – If a doctor is dismissive, ask to speak with the attending physician or hospital administrator.
  • Insist on Being Involved in Rounds & Decision-Making – Ask to be present when medical teams discuss your baby’s case.

Final Thoughts: Advocacy is an Act of Love

Advocating for your baby in a hospital setting can be exhausting, frustrating, and even scary at times. But it is also one of the most powerful things you can do as a parent. You are your child’s voice, their protector, and their greatest source of love and comfort.

Julie and Carson’s story is a testament to the impact of parental advocacy. By pushing for answers, speaking up for their daughter’s needs, and ensuring that every moment counted, they gave Ellie a life filled with love and dignity.

If you’re in a similar situation, know that you are not alone. There are resources, support networks, and compassionate professionals who can help you navigate this journey.

You are your baby’s best advocate. Trust yourself, speak up, and never stop fighting for the care and comfort they deserve.

Resources for Parents:

With love and compassion,

Rosie x

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