6. The future
When parents were planning what to include in this resource, they felt it would be useful to include what contacts, treatments and tests are involved in the first year so that parents were prepared and informed. Hover over the month on the road to find out what is involved.
The time that babies stay in hospital after birth varies, but the aim is always to discharge you home as soon as possible.
Birth
- sleep study
- cardiac echogram
- feeding assessment
- airway assessment
- blood tests
- eye tests
- hearing test
1 Month to 6 Months
- Clinical nurse specislit visits
- Feeding and airway assessments
- Sleep study if needed
- First clinic appointment if possible
- Blood tests
- Hearing tests if further one needed
- Clinic visits
- home visits
- Eye tests
6 Months to 12 Months
- Appointment from previous section if needed plus
- Pre-operative assessment
- Sleep study if needed
- Surgery
- Speech and language appointment
Parent Carer Stories
Listen to Matthew share his experiences of parenting a child with PRS
Listen to Matthew share his parenting experiences
Karine: As a parent of a child with Pierre Robin Sequence can you cast your mind back to the first year of life and tell us how you coped with the nasal pharyngeal airway?
Matthew: Well, Alex had a lot of complicated issues, one of which was the NPA Nasal Pharyngeal Airway associated with this cleft. We had a lot of things we had to combine it with so managing it was quite interesting because he had an NG tube going down as well, which meant that we had to combine all the tapes together and sticking across his cheeks like that. Luckily he wasn't moving a huge amount in his earlier years so we managed to swaddle him a little bit and then put the various tapes on and then only thing that we needed to worry about and was secretions. Getting rid of all the adhesive from the stickers.
Karine: Can you tell us about managing the Nasal Pharyngeal Airway?
Matthew: We were taught before we left hospital how to do it and we were shown how to do it a few times and then obviously asked to do it so that we could be signed off and doing all the measurements and things, the main thing was to make sure that it was comfortable for it to go down his nose so we made sure that it was well lubricated and had his head positioned backwards so that we could then put the tube up his nose and then trying to keep him still which wasn't too much of an issue at the time, while we stuck it all down so it was it was daunting at first, but then after about three or four tries, you get used to it.
Karine: Did you both as parents change the nasopharyngeal airway or did you allocate it to what parent?
Matthew: Alex's mum is actually an ex nurse so she's used to doing procedures like that, but we actually tended to have mainly me doing it purely on the basis that it was like a good cop, bad cop type routine where Alex got used to hugs from mum and all the bad bits were coming for me. It didn't really work out like that to a certain degree because sometimes if he it pulled out whoever was there at the time did it and he was equally happy with hugs from whoever did it at the time, but generally speaking, it was me that did it.
Karine: On reflection. What advice would you give to parents who are just starting on this journey?
Matthew: Whoa... it’s a fairly big diagnosis to be hit with, you'll probably be panicking at first and thinking, what do I do, what do we do? and the world's falling in as it is daunting at first but after two or three go’s, you'll get used to it and then after a few more changes, you'll be a natural at it. The main thing is to keep your baby nice and snuggled, big hugs may be swaddle him in a blanket or something, something nice and warm and cosy. And just generally try to keep them from using their hands to go about the face. Because, because that's where half the battle he says, we've actually got the tube in and then potentially trying to pull it out. And that's where all the frustration and issues arise there mainly. A lot of it depends on how old the baby is at the time that you're doing. I mean, clearly when they're very young but not moving about so it's okay to have stuff nearby. Obviously watch out for safety things like scissors or whatever. One thing we did was have a little book with his very diverse diagnosis and erm had the lengths of his tubes in and how they needed to be caught and things like that. So if anybody actually came across as after had been an accident and he needed it replacing, they could just look in the book and sort that out. Yeah, we did all the prep beforehand and basically had everything like you see in hospital programmes where everything's in surgery when they say scalpels, knives this, that, the other and so on we had it all in a row, all ready to go. So once we became pretty proficient at it we could do a swap in 30 seconds.
Listen to Stephanie share her parenting experiences
Listen to Stephanie share her parenting experiences
Karine: As a parent of a child with Pierre Robin Sequence, can you share with us your experience of being told the diagnosis?
Stephanie: So we had a very normal pregnancy, so when Emilia was born, we had no idea that we were expecting a baby with Pierre Robin Sequence. So when we were told the diagnosis, obviously it came as a big shock to us. Originally, she was born and we were taken to neonatal and told us she had a cleft palate. So of course we have that told to us, but we didn't really know what that meant and it wasn't until the specialist nurse from the cleft team came to see us on day two when they told us about the Pierre Robin Sequence and that was diagnosed and it was at that point really when things sort of made sense or we could really sort of move forward with that diagnosis.
Karine: Once you were given the information by the cleft team, did this make a difference with how you coped with the diagnosis?
Stephanie: Absolutely, Yeah. So as I say, when we would sort of just told about the cleft, we didn't really know how to move forward with that on its own but when we knew about Pierre Robin Sequence and what was involved within that and the cleft nurses are able to really explain everything and explain what's going to happen we were able to just deal with that in a much better more positive way.
Karine: For parents that didn't receive this detailed information about the diagnosis is there anything that you can advise them or anything you feel you would have done differently?
Stephanie: Absolutely. I think the first thing that I did, which I'm sure most parents do is go straight onto Google and just straightaway googled Pierre Robin Sequence and that brings up so much research from different countries, particularly America and that really just petrified us as a family. It brings up lots of things that just aren't relevant to us here in the UK which is why I feel so strongly about this resource that future parents of children with PRS now have this resource to be able to read and feel reassured by UK evidence. So it's really, really positive future parents.
Karine: Is there anything on a personal level that you feel would have supported you better?
Stephanie: Absolutely. I think one thing that really, really supported us as a family, is the support we had from sort of local Facebook groups, if you like, that had parents on there who have had cleft babies and also PRS babies and just having that access to support from other parents to just ask questions, speak about your experiences and it was just so reassuring and we were able to benefit from that and I think the only thing that I wish I'd done is just joined those groups sooner rather than going on Google. So just, just that really is one thing I wish I'd done more of it was good that we managed to get that support when we did.