068: Trusting Your Instincts to Advocate for Your Child with Eunice Clay

If your child is in the hospital, there may be times when your motherly instincts kick in because you know that something isn't right. And as you'll hear from today's guest, there's nothing wrong with speaking up and advocating for your child, even when the medical teams tell you everything is fine.

Before Eunice Clay's son was born, all the tests were clear. Soon afterward, Jahari was having trouble breathing as there was fluid building up in his lungs. After further testing, Jahari was diagnosed with a heart defect called TAPVR. (Total Anomalous Pulmonary Venous Return)

Instead of his blood pumping back into his heart, it was only pumping into his lungs. This required immediate open heart surgery, with over 15 more of them to come, as Eunice watched her little kiddo live on a ventilator until he could have a double lung transplant. This meant that Eunice and her son would spend 46 weeks of his first year in the hospital.

She was told that her son would have a life expectancy of 7 years post-transplant. Miraculously, Jahari will celebrate his 19th circle around the sun this year.

Eunice shares two incredible stories of times when she knew something was wrong during that first year and used an advocate mindset to get the care that her child needed, despite the medical teams promising her that everything was okay.

You'll hear the importance of trusting your instincts, asking questions, and that it's okay to speak up when you know something isn't right. Eunice shares beautiful advice for friends and family who want to become advocates, the power of journaling while doing your own research, and what she's learned by seeing the world from her son's point of view.

Key Takeaways with Eunice Clay

• Why being a caregiver and advocating for children is more than a 24/7 responsibility.
• To never be afraid to ask hard questions to medical staff.
• How it’s okay to do your own research, but use actual medical trials and not just Wikipedia
• The importance of journaling with your own situation as part of your research.
• It’s a team effort, and parents and advocates are part of the team that is caring for fragile children.
• Always trust your instincts when you know something isn’t right, even if the medical teams think it’s fine.
• What Eunice has learned from this journey from her son’s point of view.
• How much strength Eunice has found in her faith to help get through the tough days.

Show Notes:

Get Full Access to the Show Notes by visiting: MatteasJoy.org/68.

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