Ten tips for managing hospital transfers – Jocelyn’s story

Cadi is our little miracle. After being conceived by ICSI fertility treatment she arrived at just 24+6 weeks gestation, weighing 1lb 11oz. In total we spent 13 weeks at three different hospitals which ranged from being ten minutes away from our home to three hours away.

The experience of transfers left us feeling a range of emotions. We were thankful that Cadi was well enough to move on but anxious to be separated. We were told not to follow the ambulance in case they had to stop en route for an emergency which was extremely worrying for us. I remember also being fearful of the new hospital and sad to leave the nursing team who had cared for Cadi. Mixed in with that anxiety was the feeling of excitement that we were one step closer to home.

Here are my top tips to help make the process of transfer easier on the whole family:

1. Be present at the doctor and consultant rounds, if you can

Doctors and consultants can change daily. By being there you are fully aware of everything that is happening and you can inform the new doctors at the different hospitals of information that may have not been communicated. Also, do not be afraid to correct wrong information; Cadi's gender and gestation were incorrect at our third hospital.

2. Ask questions

If you don’t understand something ask again. We used to look things up and would ask questions based on this. There is a lot of medical jargon used by the nursing staff; it's important that you understand what is being said about your child. We felt that having knowledge about the various conditions that Cadi had was really helpful, though scary.

3. Trust your instincts as a parent

Do not be afraid to voice your concerns even if you are at a new hospital and don’t know the staff well. If you feel that something isn't right, tell someone. Darren noticed that Cadi's arterial line was too tight and saw some discolouration in her toes. When it was bought to the staff’s attention they said they would get the doctor to look at it later. Darren insisted that it was looked at immediately, which it then was. The arterial line had to be removed due to poor circulation and her big toe ended up turning black and the tip fell off.

4. Maintain the same care routine at the new hospital

You can test the NG tube pH, conduct mouth care with breast milk and change nappies. If your baby is tiny, try not to be afraid of that. Let the staff at the different hospitals know what you are comfortable doing. Different hospitals had different procedures, but we felt it was important to maintain the routine of care we had begun. It made me feel like her mummy, rather than relying on another person to care for her.

5. Practise skin-to-skin as much as possible

At new hospitals, be bold and ask for skin-to-skin time. It was always difficult having to ask someone if we could have a cuddle but don’t be afraid to sit and hold your baby for as long as you need – babies need hugs. You will not spoil your baby by comforting them, holding them, talking to them, singing to them and reading them stories - it enables you to bond.

6. Remember that it is normal to find being transferred difficult

You form a bond with the nurses looking after your baby and you trust them. You become familiar with their routine and how they do things. Moving to a lower level hospital was difficult. I worried that they wouldn’t know how to look after my baby. Remember that even though you don’t know them yet, the new nurses are still highly trained and capable of taking care of your baby.

The aesthetic change in hospitals is also hard, our first hospital was a brand-new level three unit and our second was a tired looking level two unit, which had building work going on. To make things easier, ask questions about the hospital you will be transferred to. Sometimes you are even able to visit the new hospital, which can be helpful.

7. Ask about accommodation

We were lucky enough to be able to stay at all three hospitals that we were at. It was very important for me to be able to remain with Cadi when she was transferred to a hospital almost three hours from home. Having stayed at the hospital initially meant that I wanted to continue to reside at each of the hospitals that Cadi was transferred to. Before you are transferred ask whether it is possible to stay in hospital accommodation. It may not always be possible but some hospitals have flats on the grounds, others have Ronald McDonald accommodation. All they ask is for a donation. Having a baby in hospital over Christmas was difficult, so being able to stay with her was such an emotional relief.

8. Support your partner if you have one

It’s important to talk to each other. I felt that Cadi's premature birth had happened to just me, and not to Darren. I felt like he became a dad as soon as she was born, but I didn't feel like a real mum. I blamed myself for Cadi coming early, I felt guilty and cried all the time.

It was important that I was able to tell Darren how I felt because I thought he blamed me too. When I spoke to him about how I was feeling, he assured me it wasn't my fault. We were able to talk openly about our fears.

If you feel both or one of you needs to talk to a professional about how you are feeling then seek help. Many hospitals have a Bliss representative who can help you process your emotions and help alleviate any fears.

9. Schedule visitors and be aware that rules for visitation vary between hospitals

The visitation rules were different at different hospitals. At both the level two and three hospital there were set visiting times for family and friends. While this was great, we were only allowed one parent and one visitor at the incubator at any one time. It was important to schedule people in for visitation so that we would not be overrun with visitors. This was especially important when Darren returned to work, as he could only come in the evening to see us both, and if we had visitors we wouldn't get to spend any time together as a family.

10. Ask your friends and family for help

Family and friends are invaluable at times like this. Our friends rallied round bringing toiletries, clothing, snacks, books and even bringing in home cooked meals that I could reheat. My friends would also come and take me out for food. Family helped by looking after our dog and sending us videos. It's important to maintain a connection with the outside world because you can become very isolated in the neonatal unit. When we were due to be discharged, family helped by ensuring that the house was clean and tidy and that there was food in. Thirteen weeks is a long time to be away from home.

Cadi is now an inquisitive and chatty 20 month old who is thriving. She is reaching all her milestones. She has undiagnosed asthma (infantile wheeze) and is on inhalers. She wears glasses to correct a squint, but overall she is in good health.

Darren and I will be forever grateful to the NHS, all the nurses, doctors and consultants that we met at all the hospitals we received care at. We can’t thank them enough for taking care of our little miracle.

If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages.