Heather and her twins, William & Henry
The pregnancy was a rare (1 in 60,000 pregnancies or 1% of identical twin pregnancies) and risky one with a high mortality rate (50% up till 20 weeks and 70-80% there after). We had bi weekly scans at St Mary’s Hospital and a planned delivery of my mono-mono identical twin boys (William and Henry) at 33 weeks. It was to happen at St Mary’s but due to unforeseen circumstances we were transferred to North Manchester on the day of the c-section.
We had seen Spoons advertised at St Mary’s but it was at North Manchester where we were fully made aware of Spoons and what they did. The team in NICU were fantastic, someone came in on their day off to deliver the twins!
The boys were born within the same minute, refusing to be anything but identical, as Henry had hold of William’s leg when William was lifted out during the c-section. They were born with respiratory distress and sepsis, so were in high-dependency care for a few days, then solely on feeding tubes for 2 weeks.
The Spoons team made Christmas special for us and our 4 year old with unexpected gift bags. It made a stressful Christmas season welcoming and calming.
It was an incredibly family oriented care package and staff made a point of knowing you, the family and the baby/babies by name. They ensured you celebrated every milestone passed with your babies care: off high flow oxygen … ‘yay’; out of the incubator… ‘yay’; up to 2 hourly feeds… ‘yay’.
If I could sum up what Spoons means to me, it would be … family-centred care! Spoons is a beacon of light in an unsettling time. The staff are fantastic and at no point did I feel out of the loop with my boys’ care.
One of the real challenges was that you aren’t prepared for being discharged without your baby/babies. It is just a given that you are okay with being discharged – even though I knew this was inevitable it was very hard. The NICU team are very aware of this and you soon realise that your baby is in the best care when you can’t be there. They gave me a phone call to update me through the night on my first night at home without them, which really reassured me.
Another challenge is the medical terminology. It can be daunting but don’t be afraid to ask for clarification of what Doctors are talking about, with regards to care for your baby.
If I could share some advice with other parents it would be… do not be afraid to do anything for your baby when they are in NICU. Ask the staff and they will show you how to tube feed, and put monitors back on them when you have held them. No question is treated as a stupid one.