Making Friends on a Neonatal Intensive Care Unit

Most babies born too soon or sick will spend time on a neonatal intensive care unit (NICU). Having a baby who needs neonatal care can be incredibly stressful for the babies, parents, and their families. The month of September is NICU Awareness Month and highlights the various challenges faced in NICUs. 

The Ickle Pickles Children’s Charity is dedicated to collaborating with neonatal units across the country to fundraise for life-saving equipment and provide NICU Peer Support. Regular NICU Coffee Mornings are organised where current and former NICU parents can share their experiences in a relaxed and supportive setting.

One of the silver linings of neonatal care is the bond formed with other parents, and Peer Support Groups can bridge the gap and create a supportive community to help parents cope with stress, anxiety, or PTSD (Post Traumatic Stress Disorder). Friends made in the NICU can become forever friends in life after the NICU. 

Lucy, whose daughter Grace was born at 29 weeks, describes how her NICU friendship group kept each other positive during difficult times and was exactly what she needed to get through. Following an unexpected delivery via C-section Lucy shares Grace’s NICU journey in her own words:

“I didn’t see Grace in theatre, she was swept away to the NICU but my husband was able to take a photo of her before they did.

Grace then spent the first three months of her life on the Starlight Neonatal Unit of Barnet Hospital. It was a long and hard journey. It often felt like one step forward and two steps back.

We had our eldest daughter, at the time nearly two years old, so I spent days trying to provide as much skin-to-skin care to Grace as I could and evenings pretending everything was “ok” for our eldest.

NICU Friendships

Within the first week or so of our “stay” I made friends with three other women, a friendship that made the whole experience so much easier. We picked each other up, held each other, joked with each other- we found sunshine in the clouds.

My new friends, along with the wonderful doctors and nurses of the unit, mean that I can look back with almost a fondness of our stay. I will be grateful for the rest of my life to these amazing people.

Grace had been making remarkable progress, to the extent that discussions about going home were underway with the medical team. She had even transitioned to the "going home formula" before unexpectedly stopping breathing. Grace had experienced apnea and was transferred back to the Intensive Care Unit for intubation.

For the following 72 hours, uncertainty loomed as we awaited answers and test results. 

Grace underwent every possible examination, and all I could do was hold her tiny hand.

Despite having a supportive husband and family, a situation like this is only truly understood by those living through it. My group of friends from the unit gave me the most amazing support, whether it was a hug, a message, or a chocolate biscuit - it was exactly what I needed to get through.

Coming Home

After we came home, it was hard. Grace, like many other premature babies, had silent reflux so we did not sleep for a long time.

The GPs were very difficult and unwilling to prescribe many of the medicines she came home needing. There were so many follow-up health checks for her. It felt like the journey was never ending. I now know it never truly does but our amazing Grace is now nearly 6 years old and thriving.”

Lucy wanted to give back and help anyone with a similar experience. She is now a NeoHero for the Ickle Pickles Children’s Charity at the Starlight unit at Barnet Hospital.

The goal of Ickle Pickles’ Peer Support Groups is to break down barriers to support, share experiences, and accompany families through their neonatal journey, offering reassurance and companionship. Support is also extended after discharge through monthly coffee mornings that are open to all, free of charge.

The charity’s NeoHeroes are often NICU parents themselves who understand the unique challenges and emotions that come with having a baby in intensive care. They offer a listening ear, practical advice, and a sense of camaraderie that can be profoundly comforting during such a tough time.

In addition to Peer Support Groups, the charity’s commitment to mental health extends to the whole family. Siblings of NICU babies can also be affected by the experience and siblings need help to understand and cope with the situation. A holistic approach ensures that the entire family unit is supported and can thrive despite the challenges they face.

As we observe NICU Awareness Month, we invite everyone to join us in raising awareness and supporting NICU families.

The Early Years Alliance has partnered with Ickle Pickles to help raise awareness and recruit volunteers or NeoHeros with Ickle Pickles. Their Early Adventures Baby and Toddler Toolkit can help you recruit and work with volunteers. The toolkit highlights areas to consider, shares supporting documents, and provides information to help and advise - aimed at Baby and Toddler groups but also providing an opportunity for you to reflect on how you value and develop volunteers – for example, through peer support as well as access to training and networking events.  

Whether through volunteering, attending our events, or simply spreading the word, every action can make a big difference to small babies. Together, we can ensure that no family walks this journey alone and that we can give every newborn a chance. 

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