How do I move forward from being told it's definitely not an option?

[jen1604]

Hiya

We found out at our 20 week scan that baby boy has a cleft lip and found out at a further consultant scan he also has a cleft palate.

I was originally really wanting a homebirth. With my first I was induced in hospital due to O's heart rate being a bit erratic, she was back to back and I ended up with an epidural and a pretty traumatic birth experience. 2nd time round I had planned to give birth at home but due to the midwives not being able to get to me because of snow *rolls eyes* I ended up going into hospital at 8cm dilated. I gave birth with only gas and air but was still kept in overnight which I hated.

I was told by my consultant that homebirth is absolutely not an option this time, that home births are 'nice' but not 'appropriate' where a cleft is present. To start with I accepted that and figured he knew best but after talking to the actual cleft specialists in Bristol I have been told that from their point of view there is no reason not to give birth at home, the chance of baby needing help breathing is slightly higher but not massively and apparently they have attended several cleft home births before. She also said the only reason I would be told no is because the midwives here aren't confident delivering babies with cleft palate but that my cleft nurse would happily visit me at home instead of in hospital to help with feeding etc.

I'm not sure where to go next. I don't feel that the midwives confidence should have anything to do with where I labour I don't feel happy or calm having him in hospital and want to be at home. Does anyone know the best plan of action from here?

Thank you

 

[bobsiesgal]

If the cleft nurse would be happy to see you at home and the cleft specialists don't see a problem then could you perhaps get them to write you a letter or something stating this so that you can take it to your consultant to discuss with him again?

I would also look into whether the midwifes can bring any sort of infant breathing equipment with them to your house, although they should already be trained in infant resuscitation, so that if there are troubles with baby breathing it can be dealt with at the time.

Other than that I'm unsure of what you can do, but I'm sure some of the other ladies on here might be able to give you some good advice.

good luck!

 

[ljo1984]

id go with the specialists advice rather than consultants. i think alot of consultants are a bit too quick to dismiss HB for the slightest little things. xx

 

[jen1604]

The specialist team aren't based at my hospital- they're in Bristol, we're in Devon. All we have down here is the one cleft nurse. So they've already said any decisions on antenatal care are decided by the consultant and midwives and they have no say.

 

[ljo1984]

at the end of the day though you make the final decision. they cant make you go into hospital and have to attend your birth no matter what. have you spoken to the cleft nurse at your hospital yet? if your determined to have a HB despite the clefts then id do the research so your making an informed decision.

i have a simillar background to you, one traumatic induction, one transfer into hospital staying the night too. i know for my next home birth attempt i would be devistated with this too but if theres a possiblity you can make this work then definatly look into everything and get the knowledge and statistics for when they try saying no again. xxx

 

[Mervs Mum]

As has been said ultimately its your choice. I'm going to see if a member who had a home birth with a little girl with a cleft palate Pierre Robin Sequence will come and give her thoughts to you. She's not a regular on here anymore but I'm sure she will pop in to help on this

 

[jen1604]

at the end of the day though you make the final decision. they cant make you go into hospital and have to attend your birth no matter what. have you spoken to the cleft nurse at your hospital yet? if your determined to have a HB despite the clefts then id do the research so your making an informed decision.

i have a simillar background to you, one traumatic induction, one transfer into hospital staying the night too. i know for my next home birth attempt i would be devistated with this too but if theres a possiblity you can make this work then definatly look into everything and get the knowledge and statistics for when they try saying no again. xxx

Thank you for the good advice

I am meeting my cleft nurse on Thursday, some of the team from Bristol will be there too and also the consultant so I'm going to put forward how important it is to me then and hope having a couple of people to back me up will change the consultants opinion.

I have done some research but struggling to get anywhere, it seems quite common to birth at home with cleft lip but haven't found anyone who has braved it with palate too and a lot of the time it seems that people have had home births without knowing they were expecting a baby with cleft lip rather than planned home births regardless of that.

 

[jen1604]

As has been said ultimately its your choice. I'm going to see if a member who had a home birth with a little girl with a cleft palate Pierre Robin Sequence will come and give her thoughts to you. She's not a regular on here anymore but I'm sure she will pop in to help on this

Thanks MM, that would be great xxx

 

[ljo1984]

Well if that nurse from Bristol is present at least she's all for it and fighting your corner and hopefully your local one will be the same. Best of luck and let us know how you get on. Xxx

 

[bex]

Hi I had a planned homebirth with my daughter who is now 3. At 2 days old she was diagnosed with a cleft palate and pierre Robin sequence. Niamh did have breathing problems in the first few days but we put it down to mucus. From my experience, my homebirth was the most wonderful thing ever and i feel so lucky to have had the chance to have one. Our GP diagnosed the cleft and we were rushed to hospital, Niamh had lost a pound in weight and had to be tube fed (because of PRS breathing/jaw problems not because of cleft). Not a great start but we found that the only person who knew anything about clefts were our cleft team, our local hospital hadn't got a clue!! So to be honest, the care you get from your local hospital probably won't be great anyway.
Would I knowingly have chosen a homebirth, knowing niamhs problems, I think I would say yes, as like you, I would have had the time to prepare myself, research and get advice from other people and professionals.

There are a couple of websites you could try, CLAPA, also CLAPA facebook page and faceforward cleft. I have heard of lots of cleft babies born at home but like you say they were diagnosed at birth, but there must be someone out there who had a planned homebirth. It will be your cleft nurse who will help you with feeding, not your midwife or local hospital so why should it matter if you have your little boy at home? Any baby can have breathing problems anyway.
If you are confident in your decision and feel it is the right thing to do for you and your baby, then go for it, don't be bullied by the medical profession! After 3 years of dealing with lots of medical professionals, one lesson I have learnt is that they really don't know everything and trust your mothering instincts.
Sorry for waffling but goodluck xx

 

[Mervs Mum]

Thanks Bex

Here's a link to a cleft homebirth story

https://www.homebirth.org.uk/cleft.htm

 

[jen1604]

Thanks so much for your input Bex.

Your point about the care at our local hospital not being great is exactly my feeling, if their knowledge on clefts is limited anyway and the only person who will offer real help will be my cleft nurse then why do they think I should deliver there when that doesn't guarantee me any more help than being at home

Im nervous but feeling determined about Thursday now, luckily I have a supportive husband behind me who will back me up in not just accepting being told no without valid reason.

Thanks so much again for your advice. Xx

 

[Mervs Mum]

Don't forget Jen if they put pressure on you, you or hubby can politely stop the meeting and say you need time and space to continue to consider your options. You can also ask the head of midwifery or consultant midwife for a meeting as they are there to support normality as much as possible. They might feel they have to tow the line but a conversation cany help. AIMS might be worth talking to as well for extra impartial advice.