I think something went wrong: the first 30 days

Before you start, one thing

You are not behind. Nothing on this page has been missed because you did not read it on day one.

Do the parts you can. Ask someone else to do the rest. Most of this can be done by a partner, a parent or a friend who wants to help and does not know how.

Week 1: ask, and write it down

Ask what happened, in plain words

Ask the team to explain in words you understand. Ask them to write the main points down. It is normal to ask twice. You will not remember the first answer.

Good questions to ask:

• What do you think happened, and when?
• What tests have been done, and what did they show?
• What are you watching for over the next few days?
• What is the plan today?
• Which parts are you uncertain about?

Write down what you remember

Do this now. Memory fades faster than anyone expects, and details that seem small turn out to matter.

Write the hours in order. When you arrived. What you were told. Who came in. What machines were used. When things changed. What you noticed. What you said and what was said back.

The delivery timeline builder prompts you through it and prints. It runs in your browser and saves nothing anywhere unless you ask it to.

Ask two specific questions

Was the placenta sent to pathology? The report often explains things nothing else can. It is usually filed apart from the rest of the chart. ⁵

What were the cord blood gases? These are drawn from the cord at birth. Ask for the actual numbers. ⁵

Start a binder

One place for everything. Names, dates, numbers, results. The NICU binder pack prints with tabs and daily log sheets.

Week 2: request the records

Do this early. Records are easier to get while the birth is recent.

You have a federal right to your own records and to your child's records. A provider generally has 30 days, with one 30 day extension allowed. They may charge a reasonable, cost-based fee. They may not charge you for searching or retrieving. ^{2 6}

Ask for two separate sets

Your records. Prenatal care, labor and delivery, and your stay after the birth.

Your baby's records. The newborn record, any NICU stay, and every test.

They are usually stored separately. Ask for both by name.

Ask for these by name

Some documents are stored apart from the main chart and are left out unless you name them.

• The fetal monitoring strips for the whole labor, including the digital archive.
• The anesthesia record.
• The placental pathology report.
• The newborn resuscitation record.
• The medication administration record and any infusion records.
• All imaging reports, and the images themselves.

The records request builder writes both letters for you. It lists every document by name and shows your state's fee limit and deadline.

Do not sign a blanket release for anyone else yet

You can always sign one later. Get your own copy first.

Week 3: get therapy started

You do not need a diagnosis. You do not need a doctor's referral. You can refer your own child today. ¹

If your child is under 3

Call your state's early intervention program. The evaluation is free. After you refer, the evaluation and the first plan meeting must happen within 45 days. ¹

The early intervention finder gives you your state's contact.

If your child is 3 or older

Write to your school district and ask for an evaluation for special education. Put it in writing and keep a copy. ⁷

Why not wait

Evidence supports starting as soon as a child is identified as high risk, rather than waiting for a diagnosis to be confirmed. The first years are when the brain changes most. ⁴

If the evaluation finds nothing, you have lost nothing.

Also this week

• Ask for a hearing assessment if your baby was in the NICU, had jaundice, or had an infection. ⁸
• Ask whether developmental follow-up has been arranged. ⁹

Week 4: money, deadlines, and your own health

Money

Apply now for the things with waiting lists.

• Medicaid waivers. Many states have long waits. Applying early matters more than qualifying today. ¹⁰
• SSI. A monthly payment for children with disabilities and limited household income. ¹¹
• Your state's program for children with special health care needs. ¹²

The financial help finder lists what exists in your state.

Deadlines

Every state sets a deadline for filing a claim. Most pause the clock for children in some way, and some have an outer limit that applies anyway. The rules differ a great deal.

Check your state with the statute of limitations lookup. Then confirm it with an attorney licensed in your state. A website cannot tell you your deadline.

Your own health

This matters and it gets skipped.

Parents of children with disabilities have higher rates of depression, anxiety and post-traumatic stress. That is a clinical finding, not a personal failing. ^{13 14}

If you gave birth, you also need your own follow-up. Postpartum care is meant to be an ongoing process, not one visit at six weeks. ¹⁵

In the United States, the National Maternal Mental Health Hotline is 1-833-TLC-MAMA and it is free and open at all hours. ¹⁶

See the parent's own health.

What can wait

You do not have to do any of this in the first month.

• Deciding whether to talk to an attorney. Get the records first.
• Reading the whole record. It will take weeks and you will read it better later.
• Researching every possible diagnosis.
• Making decisions about school.
• Answering relatives.

One thing is worth saying plainly. Getting the records is not the same as deciding to sue. They are your child's medical history, and you will need them for doctors, for school and for every specialist for the next twenty years, whatever else you decide.

A printable version

The First 30 Days checklist is designed to print. It has the same steps with boxes to tick and space to write.

Print it. Put it in the binder. Cross things off. Nobody is keeping score.