Working together with the neonatal care team

Neonatal staff are the experts in medical care, and as your baby’s parent, you are an important part of your baby’s care team.

You may feel like you spend a lot of time just watching your baby, but this is a very important part of their care. You will learn about their cues and how they show they are calm, stressed or uncomfortable.

You know your baby best and are the best person to watch over their general wellbeing.

Being involved in your baby's care can sometimes mean speaking up for your baby and what you think is best for them, which can be difficult when you’re feeling stressed or emotional.

Many parents tell us how frightening it is when their baby is so small or connected to medical equipment and wires. It’s normal not to feel confident touching or holding your baby at first, and to be worried that you might cause them discomfort or interfere with their medical care.

The priority for staff on a neonatal unit will be to look after the babies, but they are also there to support parents. This can vary between units, but staff should encourage you to be involved in your baby’s care and teach you how to comfort and care for them.

This section offers some suggestions for how you can approach conversations with staff about being involved in your baby’s care and procedures.

Talking to doctors during rounds

Each unit works in a different way, but there are some routines that are found in most hospitals. ‘Rounds’ are when the medical team plans your baby’s care. These usually happen once or twice a day: one in the morning, and one in the afternoon.

You can ask to be involved in these, and the doctors will try to explain what is going on with your baby’s care in simple terms so that everyone can understand. Don’t be afraid to ask them to simplify or repeat things, they will want you to fully understand your baby’s care.

Taking part in rounds gives you a chance to stay informed and be fully involved in decisions about your baby’s care. Feel free to ask the medical team questions or share any thoughts you have about your baby’s condition or treatment.

For example, you might ask the doctor:

• “How has my baby responded to treatment?”
• “What’s next for my baby? What other procedures are due to happen?”
• “When will the next procedure happen?”

You can also ask them to explain all the treatments to you:

• “I don’t know what that means, please can you explain it again?”

You can also use this time to tell the staff what you have noticed about your baby and what you want for future procedures. This might include:

• Telling them how your baby seems to you. Perhaps they have been awake or sleeping more than usual, crying or seem uncomfortable.
• Asking them to wait before doing any further procedures because you have noticed your baby is distressed.
• Telling staff that you wish to be present for, or to comfort your baby during, procedures and asking them to show you how you can be involved.

Talking to the care team about being involved your baby’s procedures

It can be hard to know what role you play or how to look after your baby on the neonatal unit. Every baby will be getting different care depending on what they need. This means it’s important to talk to the care team about what is happening with your baby and what you want for your baby.

Sometimes staff will perform checks and tests on a baby without their parents, so if you’re keen to hold or comfort your baby during their procedures, let the care team know.

You could ask them questions such as:

• “What is going to happen? Please explain the procedure to me.”
• “How can I help comfort my baby during this procedure?”
• “If I’m not holding my baby, how else can I comfort them?”
• “I would like to settle my baby before the procedure and be there to comfort them after procedures. How can we make that work?”

Talking to staff who discourage you from being there

Parents have told us that sometimes staff have discouraged them from being there during a procedure. This is most common for procedures that are thought of as more distressing to watch, such as the Retinopathy of Prematurity (ROP) eye test or intubation (placing a small breathing tube into a baby’s lungs).

Staff might want to protect parents, but your involvement in your baby’s procedures is your choice. If you would prefer to be with your baby for a procedure, you can let the staff know and they should try to involve you where they can.

Lots of parents aren’t able to be on the unit as much as they would like. If you would like to be there during your baby’s procedures, you can make the neonatal staff aware of your wishes. This won’t always be possible, but they should try to accommodate your requests if they can.

Some parents have told us that they found it upsetting to find out that their baby had had a procedure without them being told. This can even happen when you are on the unit but in a different room.

You can raise this with staff by saying something like:

• “I know my baby went for a procedure before I got here today, but in future, I would like to be there for as many of their procedures as possible. How can we make this happen?”