5 things Ickle Pickles’ mums wish they’d known before having a premature baby
As part of Ickle Pickles' charity partnership with the Early Years Alliance, this article was published in their digital magazine to raise awareness of neonatal care and help make a difference for babies born too soon.
1 in 7 babies end up in neonatal care, so there is a high likelihood that you or someone you know is going to experience a Neonatal Intensive Care Unit (NICU).
The idea of having a baby prematurely can be incredibly scary, but many people have been there. Ickle Pickles is a Children’s Charity that works and campaigns nationally to give every newborn a chance.
Having information about what NICU can be like, and how to prepare and help, may make all the difference for NICU parents. So, Ickle Pickles’ mums reveal five things they wish they had known about being the parent of a premature baby.
1. It’s a rollercoaster of emotions
Michelle went through a frightening and emotional birth via emergency C-section at just 24 weeks pregnant. Her daughter Charlotte was born weighing just 518 grams (1lb 2ozs) and spent the next 16 weeks in a NICU unit. Michelle remembers her time as a NICU parent as really challenging.
“I wish I had known that it was ok and perfectly natural to feel a whole range of emotions including sadness, fear and guilt. Having a premature baby and spending time in a neonatal unit throws all the norms out of the window. I felt sad that I wasn't able to stay pregnant and keep her safe for longer. I felt responsible for her early birth and felt like I had missed out on all the joys of having a bump. Instead, everything happened far earlier than I had anticipated and my high levels of fear and anxiety made bonding hard.
Also, my baby was in a hospital over an hour away and every day I made the 70-mile round trip to spend time with her. All whilst having an older daughter at home who needed me. The daily commute was exhausting. It was hard not to feel guilty that you were not at the hospital 24/7 but also not at home for your other child.”
Many parents will spend weeks or months caring for their preterm baby on a neonatal unit, often a long way from home. Overnight accommodation for parents is rarely available, meaning they must repeatedly endure the distress of being separated from their baby. At this difficult time, the support of family and friends is key. Support can come in many ways: driving a parent to and from hospital, providing meals and childcare or just offering a hug.
2. You can be involved in your baby’s care
Lorraine is a NICU mum of Owen and Luna. Owen was born prematurely at 26 weeks and sadly passed away at 12 weeks old. Her daughter Luna also received neonatal care, after her early arrival at 34 weeks. Lorraine wishes she had known more about NICU and what to expect.
“We knew our son was arriving early so perhaps a tour or a virtual tour may have helped us to prepare. I also wish I had known it was ok to carry out care for my baby, even in the very early days. The neonatal teams, rightly so, can be so focused on caring for your baby and sometimes communication is lost between the team and the parents.
As soon as I knew, I could care for my son, I was a lot calmer and felt like I was actually being 'his mum', not just someone watching on from the sidelines.”
Enabling families to be involved fully in their baby’s care while on the neonatal unit is a vital part of improving outcomes for babies and their families. Efforts to provide family-integrated care are increasing, but practical barriers to making it a reality for all remain. Ickle Pickles advocates for family-integrated care and works on offering virtual visits to neonatal units.
3. Transport teams are providing incredible levels of care
Charlie was born 12 weeks before his due date, at 28 weeks and two days, weighing just as much as a bag of sugar (2lb 4oz).
One of his nurses called him her ‘Ickle Pickle’ until he was named Charlie when he opened his eyes for the first time after 13 days. Founding the Ickle Pickles Charity after Charlie came home from NICU, co-founder Rachael realised that because babies are treated in neonatal units for long periods, a Transport Team’s short but vital role can be overlooked when families consider donating or fundraising once their child has returned home.
“I wish I had known about the key role the neonatal transfer teams play across the country. When we had Charlie we were lucky that he was cared for in the same neonatal unit and did not need transferring elsewhere.
Having recently had the privilege of riding with the London team for a day in a specialised ambulance, it was humbling to see the dedication, precision, care and expertise these professionals have for every minute they are on shift.
They are relied on heavily by the neonatal units to transport babies across their network (and beyond) safely to ensure they receive the care where they need it the most. At a hugely stressful time for the babies and their families, these teams are there to reassure and deliver an incredible service that is so often overlooked.'
Ickle Pickles strives to address that inconsistency and currently supports and collaborates with three Transport Teams.
4. Connect with other parents
Julie’s journey through neonatal care was a shocking experience. Born at just 24 weeks, her twin babies were on the edge of viable life and her son Harry fought bravely for 19 days of his life. She says “Ickle Pickles has not just allowed me to share my experiences of being a mother of premature babies in neonatal care, but also as a mother who has lost a baby. Harry lives on in Jack, which gives us a constant reminder of how special he is and how he will never be forgotten.
As Head of Peer Support at Ickle Pickles, I am passionate about supporting parents who have been through the neonatal journey and want to chat, receive support and meet other parents who have had similar experiences.
These sessions have been invaluable to our neonatal parents. They enjoy meeting like-minded people, who can understand the journey they have been on and have no judgements about their babies, especially those with health issues or special needs. They share tips and advice but also offer friendship and a shoulder to cry on if needed.”
Everyone’s story is different, and there are hard truths and sad or complicated stories that come with prematurity. In the majority of cases, it will be okay but the psychological impact of this experience can be profound and may not be fully evident until long after discharge home. Remember, you are not alone and there is help available.
5. Everyone can be a NeoHero
NICU parents Chris and Lorraine explain: “We experienced the NICU journey. One we wouldn’t wish on anyone but my goodness, those people who looked after our babies were amazing. We owe so much to them.
Seeing just how amazing the team were caring for our son Owen made us want to give something back. That is how we started our fundraising and volunteering journey with Ickle Pickles. I volunteered as a NeoHero for a year organising fundraising events and supporting the staff on the neonatal unit being the link from the neonatal unit to Ickle Pickles. It was a wonderful way for me to thank them for everything they did for not only Owen but us too!”
Since 2009, the Ickle Pickles Children’s Charity has bought small and large equipment for over 50 neonatal units around the UK and continues to fight for the survival of every Ickle Pickle.
Would you or someone you know like to volunteer as a NeoHero and support your local neonatal unit? You can help parents with a newborn or baby in neonatal intensive care at one of Ickle Pickles’ coffee mornings, get involved with fundraising events or raise awareness of prematurity.
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