3 Blood sugar not checked and no discernable symptoms present at birthing facility

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Your Name

Your Email Address

Your location

Street Address

Street Address Line 2

Postal / Zip CodeCountry

Your Phone Number

Country CodeArea CodePhone Number

Year Your Child was Born

Your Child's Age at Diagnosis

Please include the word "months" after the number if the diagnosis came at less than a year old.

Hospital Name

Hospital Department Name

Hospital Contact Title

Hospital Contact First Name

Hospital Contact Last Name

Hospital Contact Email Address

Hospital Location

Street Address

Street Address Line 2

CityState

Zip CodeCountry

Your Story: Describe when your child presented with symptoms and how your child was diagnosed? What symptoms did your child exhibit that prompted you to reach out for medical care?

My child has known neurodevelopmental challenges

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{hospitalDepartment}

{hospitalName}
{hospitalAddress:city}, {hospitalAddress:state} {hospitalAddress:postal}

To Whom It May Concern,

I am sending this letter to you and others at your hospital with the goal of sharing my experience and to advocate for increased awareness of the rare condition, congenital hyperinsulinism (HI). I am the parent of a child born at {hospitalName} in {yearYour}. At the time, we did not know that our baby had HI. My baby did not present with symptoms and was sent home without a diagnosis. It was not until age {yourChilds} that our child was finally diagnosed.

The purpose of this letter is not to file a complaint or assign blame. My goal is to inform you and other professionals at your hospital that a baby born in your hospital’s care was later diagnosed with HI, and to emphasize that early identification and treatment of hypoglycemia are essential to prevent brain injury and death. In many cases, hospitals may never otherwise learn of the later diagnosis or the long-term outcome. By sharing this information respectfully, families can help close the loop, support learning, and encourage improvements in newborn hypoglycemia screening, follow-up, and care.

{yourStory}

{textTo}{ifYou11}

I have since learned that brain injuries from prolonged hypoglycemia are indeed preventable. That is why I am reaching out to you. I believe deeply in the capacity of hospitals like yours to make meaningful improvements that protect newborns from preventable harm.

I am taking the opportunity to share information about HI for the benefit of future patients. I hope you will join me—along with other families affected by HI and the clinicians who treat them—in working to reduce delayed diagnoses and improve outcomes for all babies born with HI.

To support this effort, I am including a link to the advocacy page of Congenital Hyperinsulinism International (CHI), which provides detailed information on the needs of people born with HI and the steps hospitals can take to ensure early recognition and appropriate management:

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This advocacy resource was created by CHI’s Collaborative Research Network (CRN), which includes 62 members and advisors from 17 countries—rare disease advocates, health care professionals, and researchers all committed to improving the lives of people affected by HI. Through research and advocacy, the CRN focuses on timely and accurate diagnosis, evidence-based treatments, standardized clinical guidelines, and improved access to expert care.

By 2030, CHI’s goal is to end preventable brain damage and death resulting from HI. Achieving this goal begins with early recognition and effective management of hypoglycemia at birth. I hope you will consider joining us in this important work.

I would be happy to visit your hospital to share our story and speak about the importance of early identification and management of HI from a parent’s perspective. CHI can also arrange for a patient advocate, pediatric endocrinologist, or neonatologist with expertise in HI to present educational sessions to your team.

If you would like to connect, please contact me at {yourEmail}. You may also reach CHI directly at info@congenitalhi.org for information on getting involved in HI advocacy and education.

Thank you sincerely for your time and consideration.

Sincerely,
{yourName}

CHI is facilitating the transmission of this information and has not independently verified its accuracy or reviewed the personal sections added by the writer.

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Letter 3: Blood sugar not checked and no discernable symptoms present at birthing facility