Help Families with a Sick Newborn Baby in Hospital

The following report shows the sort of support that our Neo Natal Family Support Workers give in an "Average" week.

Rainbow Trust Children’s Charity launched a unique Neonatal Family Support service working with the Chelsea & Westminster Hospital in London. The service helps families cope with the pressures and complexities of having a new born baby in intensive care.

I joined Rainbow Trust in September 2014 as the first Neonatal Family Support Worker. Working with neonatal families is something close to my heart as I, myself, spent time on a neonatal ward as a baby.

My week usually starts on a Friday when I do all my paperwork and work out where I need to be for each day of the week.

Monday

So, today I collected Katie, mum of Lauren, her daughter, and took them to a full day of doctor’s appointments at Great Ormond Street Hospital. Lauren was born 13 weeks premature and spent a long time on the neonatal unit. She was finally sent home when she was six months old but, due to her chronic lung disease, she is constantly on oxygen on which makes travelling on public transport very difficult. Lauren’s dad works so Katie is unable to get to and from the hospital with Lauren on her own but transporting a baby and all that comes with a normal baby, an oxygen tank and herself would be close to impossible for Katie on her own.

Once we got to Great Ormond Street Hospital, Lauren went straight in for her CT scan with Katie following. After the scan, Lauren was scheduled for an ultrasound followed by an appointment with neurosurgery.

As with most hospitals, appointments cannot always run on time and children and parents spend a lot of time waiting around for their allotted time.

Lauren and Katie were finally finished with all their appointments and I took the pair home by 6pm that evening. It’s a long day for anyone but especially for a mum and a small baby. Without my support Katie’s husband would have had to take a day off work or Katie would have had to battle on public transport with Lauren and all her equipment.

 Tuesday

 Today I am taking Laura to visit her two month old daughter, Susan, at the Chelsea & Westminster Hospital. Susan is in the Neonatal Intensive Care Unit as she was born at just 26 weeks.

On the way to the hospital Laura talks about so many things including Susan, her family, their holidays and Laura’s childhood. Spending the whole day on the unit can be very quiet and lonely for Laura so having some time to talk about everyday things in the car makes the long wait that much more bearable.

 Once Laura is on the ward with Susan, I attend a “Family Matters” meeting with a group of other health professionals to discuss any families that may benefit from Rainbow Trust’s support. This time also gives me a chance to share what I can do to help and support families on the unit.

 After the meeting I went to find Laura and meet her precious baby that I have heard so much about. When Laura was ready to leave I took her home which gave her one day in the week where she didn’t have to battle public transport to visit her fragile baby in hospital.

 Wednesday

 This morning I am taking Helen, mum of Alex, Finley and Aisha to visit their baby sister who is in intensive care at St Mary’s Hospital in London. The children aren’t allowed into the ward for long so while Helen spent time with baby Janine, I took the three children to the hospital playroom where they played and we made “Get Well Soon” cards for their sister.

 At the end of the day Alex, Finley and Aisha were able to see their sister for a while and once they were ready, I drove them all home.

 Thursday

 Part of my role is assessing families that are newly referred to Rainbow Trust for support. During these meetings I discuss, in more detail, what we can offer and the sort of support that might benefit the family. Today I had a meeting with a family that is new to Rainbow Trust. We talked about what their needs are and how I might be able to help through this difficult situation. It gives them a chance to find out what we are about and to ask any questions they might have after being thrown into this new unexpected world of life on a neonatal ward.

 Friday

 Friday is our team meeting day in the office. We talk about the families we are supporting and have the opportunity to share any concerns or challenges we are facing. It’s also a chance to catch up with colleagues who know and understand what our work is like.

 Being in the office means I can catch up on admin from my busy week which includes making case notes, follow up phone calls and planning for the following week.

 It’s a busy role but I am enjoying it, meeting new people and helping families in a situation that no parent ever hopes to find themselves in.

In July 2014, baby Paola was born at just 24 weeks, over three months before her due date and weighing less than two pounds. Due to her extreme prematurity, Paola suffered from a number of health problems and was on the neonatal unit at Chelsea & Westminster for a long time. Rainbow Trust Children’s Charity began working with the whole family in early August when the baby was 10 days old. Dora, Paola’s mother, was understandably, very distressed having to visit her baby in the hospital, whilst juggling the care of her three other children, Porter (5), Parker (4) and Mona (2). Being so young, they were unable to visit their new sister on the neonatal unit due to the risk of infection. The three children were all exceptionally lively and very excited at the arrival of their baby sister but often confused as to why they couldn’t see her. With their father at work, Dora was unable to visit Paola for the four months she was at Chelsea & Westminster hospital. She was then moved for a month to Northwick Park hospital.  

Amy, our first Neonatal Support Worker, was able to offer transport to and from the hospital at least twice a week which meant that Dora had precious time with her baby daughter. At the same time, Amy provided sibling support so Dora knew that her other children were being looked after. Amy took the children to playgroups, something they had never done before due to a lack of transport or resources at home.  The difference these outings made to the siblings was noticeable. Prior to Amy’s support, the siblings would get angry and upset whenever Dora went to visit the baby, but started to look forward to their outings with Amy.  She helped with school runs especially on the way to or back from the hospital and helped with shopping, which gave Dora some much needed respite. 

In late December, Paola was discharged from hospital and was able to go home on oxygen. Amy took the three siblings out for most of the day so that Paola’s parents and health worker had an uninterrupted day moving her home with her oxygen tank. 

When the siblings got home, Amy explained what was happening and why their baby sister was connected to the equipment.  She had to keep them from jumping on Paola as they were so pleased and happy that she was finally home! 

Paola still has numerous hospital appointments but she is at home with her parents and siblings. Rainbow Trust continues to support, providing transport, hospital assistance and sibling care. Due to the constant demand of the young children, Amy offers respite for Dora, taking the children to their favourite playgroups, which allows Dora some alone time with her baby. 

Since Paola was born, Rainbow Trust has provided over 150 hours of support to the family. Dora is always extremely appreciative and grateful for all the charity’s support and involvement and explains how excited the children are when they see Amy’s car outside the house, as they know it means a day of fun and laughter.