The thought of life back home with all this equipment and processes was daunting. I had made reminders on my phone calendar to help remind me check stock levels of certain things; her Infantrini (high calorie milk), her Oxygen supply, Bolus sets for tube feeding, tubes themselves, Tegaderms and Duaderms, PH strips, Syringes. Then her medication, she had a of of reflux medication, then also her consultants and chasing up her referrals and appointments.

Don’t be afraid to keep calling and chasing referrals up. I called quite a few times when I hadn’t heard of people I needed help from, I’m glad I did as it turns out some referrals hadn’t been made and I went a year without a Paediatrician. It’s important to keep chasing up as recently there were system issues at the hospitals where they had no information of appointments or follow ups.

• Baywater – they took care of oxygen tubes and Oxygen cylinders, keep check of the oxygen levels and always check the Engineer is filling the bottle to the top. I had it quite often were the bottles were only half full and had to call them nearly every day to keep sending out new ones.
• Nutrica Homewood – they take care of specialist feeding supplies. Serenity was gravity fed using Bolus sets for a while but when she needed bigger portions, she was moved onto a pump with a Giving set. Its important to check your stock levels and answer the phone when they call to do a stock take, you could end up with little, or even surplus stock.
• Dietician – Probably the most important consultant with PWS. They will advise you on the calorie in-take and what she should and shouldn’t be eating. Please do your own research though on a PWS diet as some Dieticians have not had any experience with Prader-Willi Syndrome. This was the case with Serenity, so with the dieticians input, my own research, a little input from the Prader-Willi Specialist and advice from the Prader-Willi Association, I think we have a good diet that works for us.
• Speech and Language Therapist – They will work along side the dietician, the SALT will look at Serenity’s ability to suck, swallow, and breathe all at the same time while she is young. As she got a little older she was more interested in the sounds Serenity started making. We haven’t seen a Speech and Language Therapist for a while as we moved out of the area. Serenity can only currently make the ‘m’ sound.
• Occupational Therapist – Will work along side the Physiotherapist. This consultant is interested in play, co-ordination and concentration. They will also try and identify any equipment that will make her and the parents life easier. We had a Tumble Form for a while (a padded and supportive chair) and gave this back as she can sit in a high chair, with supports (rolled up blankets under her knees so she doesn’t slip, and around her sides so she doesn’t fall to one side – its important to keep the back straight). We also had a bath seat to try for a while, but this didn’t work for us as it was too restrictive.
• Neonatal Consultant – You will see the Neonatal consultant for up to a year after birth. We had around 3 appointments with her consultant who diagnosed her up to a year after birth, she checked on referrals and I was seeing the relevant consultants.
• Physiotherapy – Works along side the OT. They have been interested in Serenity’s posture, advise on the supports I can give her while sitting and lying down, advised on her rolling and holding her head up. This consultant is mainly focused on the physical and strength side – another very important consultant due to the lack of muscle tone.
• Paediatrician – I think most babies that was on Neonatal see a Paediatrician, we have only seen them once due to the delay in referral but to be honest I was pretty much updating them of all the other people she’s seen. I’m assuming the Paediatrician is there in case of any other issues such as stomach aches, colds and other hospital visits.
• Genetics – We have only saw clinical genetics once. They went through the genetic testing that was done, the results and outlined the condition. Again, quite negative, she focused on all the stuff Serenity probably won’t be able to do, she also said Serenity would be very manipulative because of her condition. She will reach her milestones in her own time!
• Lung and Respiratory Specialist – As Serenity was on oxygen for a while, and due to her respiratory effort at birth she was seen by a Respiratory specialist a few times. Whilst she was on oxygen she had to have regular sleep studies done at Stoke Hospital to asses her breathing, her movements, her oxygen and CO2 Levels. We had to have these sleep studies done until they said she didn’t need oxygen support anymore. As Serenity and other PWS Children will go on Growth Hormone, they will always have to have some input from Respiratory Doctors.
• Endocrinologist – They will deal with the Growth Hormone from about 1 year of age (depending on the child) and the Hormone Replacement Therapy when they are at teenage age. They deal with the prescriptions, sometimes with the GP, and the training. The Growth Hormone is administered at home, daily by the parents / carers.
• Ophthalmologist – Serenity has only minor troubles with her eyes, she has a slight squint. They will deal with prescriptions for glasses and checking up on the eye health. Serenity has a slight prescription but wont have glasses yet.
• Community Nurses – They will check up on things at home, do Serenity’s weight, speak to the GP’s if needed, training for NG Tube feeding and provide any support at home.
• Health Visitors – They will check-up on you at home, make sure you are seeing consultants and you are getting on okay. I think every birth has health visitors. They also let you know of the classes and groups are available in the area which is quite good.
• GP – For anything else, and dealing with prescriptions. They will be copied into all letters from consultants so they can always stay up to date.

I’m sure its overwhelming reading this long list, but most of the consultants carry out home visits which makes it a lot easier, and some like the Occupational Therapist and Physiotherapist usually come together. There are a lot of appointments but it has died down a little bit for us. I got used to the fact that this now was apart of my life and changed my mindset around the fact we were lucky we had all this input and support.

It can be quite lonely, I felt like all I was doing was seeing specialists and going to the hospital. I started working again 4 months after Serenity was born so I could save for a family home (me and my partner was living at my moms at the time). I was very lucky as my new company were very supportive and I went back to a slightly different role so I could work more flexibly while looking after Serenity and going to all these appointments. I only ever left the house by myself to see specialists, I lost every single one of my friends as my attention was solely focused on Serenity and making sure she was okay, maybe I should of checked in on them more, but there wasn’t much space in my brain to process thoughts like this. There were so many anxieties around the things I was told about how vulnerable she was and this affected me quite a lot – but I’ve learned she is so much stronger than everyone thinks! I probably barely left my bedroom with her, and if I did I would only go out with my Partner as we had been through all this together.