Difficult pregnancy, difficult decisions ahead

[NervousNelly1986]

Hi all,

First off, apologies for the long post!

I'm 22 weeks pregnant this week and my husband and I have been on a rollercoaster throughout our pregnancy. At our 12-week scan the sonographer discovered a raised NT level, at which point we were then referred for a CVS test and foetal echo. We were so happy when we got the all-clear for both, but at my 20 week scan it was discovered that our baby's left leg isn't growing at the same rate as her right one and is significantly shorter (the left femur is measuring at 20mm vs 31mm on the right). On top of this, her left tibia is also considerably shorter, has a confirmed case of talipes, and the leg is not extending below the knee, which the consultant says could be a case of various possibilities: fixed flexion deformity, amniotic band syndrome, or some vascular accident that happened early on in the pregnancy - none of which can be confirmed until after the birth.

As first time parents, this all hits us especially hard. Becoming parents in the first place is a challenging thing, let alone bringing up a child with a physical disability. Despite that, we are trying to keep positive and we want to do everything we can do keep her however we are finding it incredibly difficult to predict the outcome of our daughter's quality of life in the future and neither can the consultants.

We're not ones to gamble on any life decisions, especially one that involves bringing another human into the world that hasn't "asked" for this. I think if it were one isolated case, we would without a doubt be confident in bringing her into this world, but because it's a compounded list of other issues, it's becoming more difficult to want to continue through with the pregnancy.

Are there any parents who can shed some light on their decision to keep their baby, despite their physical shortcomings? Particularly parents with children with amputations: It sounds cruel to even think about it, but how costly is it to provide your child with top of the line prosthetics? Do you fear that your child might feel any signs of resentment towards your decision to keep him/her?

[DawnMumsnet]

Hi Nelly,

So sorry that you're going through such a worrying time. We're sure there are plenty of MNers who will be able to offer you advice and support, but as you've posted in our Bloggers topic, they may well not find you here.

Do you mind if we move your thread over? We have an Antenatal Tests topic and also a Pregnancy Choices one where we're sure you'll find the support you need.

Do post here or hit the Report button to let us know which you'd prefer.

Best wishes from all at MNHQ

[NervousNelly1986]

Hi, sorry, I didn't realise I hadn't posted in the right spot! Please do relocate my post :) xx thank you!

[NervousNelly1986]

Sorry, if you could move this across to Pregnancy Choices that would be great xx

[DawnMumsnet]

No problem at all, will do that for you now.

Do feel free to give your thread a bump (literally, post the word 'bump') to get it back into Active Conversations.

Best wishes

[Caenea]

Oh, OP.

I haven't faced this. I can't advise. But whatever decision you make, it is YOUR decision - you and your husband. Nobody else can decide for you.

Prosthetics can be expensive. Caring for a child with a physical disability will be undoubtedly difficult. If you believe her quality of life would be so poor as to require support you cannot offer, then I believe that, whilst horrifically difficult, it may be kinder to end it.

Best wishes.

[kittenxo]

What have the specialists predicted the babys physical development will be like (if they can do so?)

Would you have extra scans to monitor the baby's growth?

Loads of people with physical disabilities have great lives - I can understand it's a shock but definitely have a long think and talk to your husband about how you are both feeling, and how you'd both feel with continuing or terminating the pregnancy.

Also in this day and age there's so much technology to help people with physical disabilities - who knows how it will have advanced in another 5, 10, 20 years when the baby is growing up?

Good luck

[Gingerbreadmam]

Hi nelly we talked on your previous thread. For me a big thing that weighed on my mind is it would be the end of my family. I wouldnt want any other children as i would hate to have anothrr without any problems and my eldest to always wonder why it happened to him and be envious of their siblings who were 'normal'.

i accept that wouldnt be the end of the world as i would already have a child but having the decision effectively taken away from me felt very tough.

I will be upfront and say ny situation ended in a very different way than i planned and i dont want to complicate or influence your thoughts as although our childrens problems sound almost identical they could also be very different.

i think you are very brave contemplating your decisions seriously and appreciate time isnt and information isnt really on your side. i hope you get there in the end.

did you speak to steps? they are very very helpful and have lots of parents on there who have faced our fears with successful outcomes.

[Gingerbreadmam]

another thing which hit me is finances. i only ever intended taking 6 months maternity but faced with his diagnosis i would have had to leave work.

im not a workaholic by any means but have been full time employed since the minute my gcse's were done and i had never planned on not working. it was a shock. but unfortunately i think would have been very difficult to find childcare that could accomodate my son particularly at such a young age.

i researched and researched into whether we would be entitled to disability benefits and particularly in the first few years it didnt look likely. i honestly did not know how we would manage financially.

[picklemepopcorn]

I had a childhood friend with a leg which ended at the knee. He was great. Had no problems at all. That was a long time ago and prosthetics are much better now.

[PotteringAlong]

my sister does. She says that other people project things onto her, i.e. How hard it must be to do x, y and z whereas the reality is she's never know any difference and therefore didn't have to learn how to walk again etc, she just had to learn to walk.

[NervousNelly1986]

kittenxo, we have another scan scheduled in today (by our request) to see how baby is progressing in terms of growth. The consultant basically told us that we will likely not see much change, but I think we need to see her anyway for peace of mind. In terms of physical development otherwise, we've been told that the prognosis is excellent as the rest of baby's limbs and head are growing at just the right pace.

I think my biggest worry at this point is how much the 'system' will help us. I've been reading conflicting stories about kids who have received only very basic (sometimes heavy, clunky) prosthetics covered by the NHS, while others have been able to choose based on their everyday needs/lifestyle. You're very right about technology today and the rate at which new research is being done - it has certainly crossed our minds and gives us hope :)

Gingerbreadmam, thanks again for being a voice of reason! I think maybe you and I might on different sides of the fence about having more kids because my husband and I certainly hope to in the future regardless, fingers crossed. We feel that although it might be difficult for a child to see his/her sibling with all limbs in tact, it's also an important exercise for them to learn acceptance of their own body (we're very keen to raise our kids, regardless of their disposition, to be body positive). We also see an older sibling with a physical disability to be someone a younger sibling can look up to and not feel pity towards. It's possible by opinion might change! Again, financially speaking, it will take a lot of planning to bring another child into the world. I intend to go back to full-time work if it permits, but that's surprising that you weren't able to find an appropriate nursery to care for your son! Is there much special attention your son needs in his day-to-day life that a teacher may not be able to handle? I've also looked at the NHS's disability benefits and it looks like he might qualify for disability living allowance? I'm sure you've looked at all these options.

I have spoken to Steps btw, they were very helpful and non-judgmental which was nice. It was good to hear about the positive outcomes but again, I think each couple and family is different and we all have our deal-breakers for what is acceptable/unacceptable when it comes to making this tough decision.

Thank you picklemepopcorn and PotteringAlong for sharing your first-hand experience :) We also feel that bringing a child up with a congenital leg deformity may not feel the same feeling of resentment/dread because she will never have known what it is like to have two functioning legs in the first place - she'll just have to get on with it as harsh as it may be. Again, reinforcing positive body image is going to be at the centre of bringing her up should we wish to go down that route.

[Gingerbreadmam]

as i said, things didnt go to plan for me.

it wasnt schools i was worried about but daycare. we didnt look into it thoroughly but where i live there are certainly not any specialist nurseries that would likely have coped with his needs.

with regards to disability benefits it is all to do with when an amputation is done i am lead to believe and from the appointments we had they dont tend to do it until they are a little older.

[Zoe1983]

Hi OP, I'm sure you've been recommended them many times already, but just in case you haven't, there's a great organisation called Antenatal Results and Choices (ARC) who have a helpline to counsel families in your position. I hope you find some clarity soon xxx

[Bumblebeebuzzybee]

Hi OP

If you haven't already then please ask your consultant or GP for a referral to your local re-enablement services centre. You may even be able to self-refer. They'll have a consultant, prosthetists, physio and occupational therapist who are really experienced in working with children with limb loss and/or congenital challenges and who will hopefully be able to answer any questions you have. There is usually a centre in each county that you'll be able to access and your GP / hospital should have their contact details.

[xStefx]

One of my friends has a prosthetic leg, it doesn't define her in any way she is wonderful- just as she is and she has a husband and 2 DC's. You cant even tell actually when she walks or anything.

With how far prosthetics have become and disabled facilities I cant see why your DD will have any trouble leading a completely full life.

[PotteringAlong]

OP - I don't think "you just get on with it" is harsh, I think it's true! If it's just the way your life is then it's just the way it is.

Also, my sister used to love whipping her leg off to go swimming at school. It was her party piece

And I wouldn't worry about other siblings. I once had a proper tantrum about the fact that i couldn't take my leg off like dsis could and how unfair life was for me and my stupid 2 legs...

[picklemepopcorn]

That sounds familiar, pottering. My friend used to grab us with his half leg when we went swimming. It was immensely strong and because it was short he kind if snuck up on us. Hard to describe, but I'm smiling as I remember! And the day when we were about 17 when he met my best friend and they were dancing and I felt obliged to tell her later... I probably shouldn't have but I was young and silly...

[picklemepopcorn]

How did you get on with your scan today, OP? Hope it was ok.

[NervousNelly1986]

Hi picklemepopcorn and any others wondering.

We had a scan with our consultant yesterday and while not much has changed, a glimmer of hope is that baby's left leg was moving freely, indicating to us that it is not a nerve problem on top of the short femur and talipes. The consultant concluded that given the isolated short limb, it is a case of femoral hypoplasia i.e PFFD (I'm assuming?)

We're going into our consultation with the orthopaedic surgeon today to get an idea of what course of action would need to be taken the moment the baby is born. I'm genuinely looking forward to what he has to say but DH and I have pretty hard lines of what is reasonable and what is not.

I want this baby so much, but not at the expense of her being in pain due to multiple surgeries and procedures over the course of her childhood and adulthood. I know I don't have to answer to anyone for my decision, but still need to voice that fact. :(

[PotteringAlong]

I hope today gives you answers that mean you can make the decision that's best for you and your family. Come back and let us know what they say if you want to. No judgement here

[picklemepopcorn]

for today.

[NervousNelly1986]

Hi all.. bit of a nightmare situation today! :( I was sure the appointment we had was for 2:45pm (I remember confirming with the secretary at the time of her call), but in fact it was 10:45am!). The woman I spoke with obviously wasn't speaking clearly as apparently TWO other couples didn't show for their appointments/showed up late as well! We now have to wait another week to speak with the consultant. I am absolutely gutted and just wanted to scream at the lady at the reception desk. The consultant usually works out of Hull and is only in York on Thursdays, so we definitely can't see her before then.

My husband and I have decided that we are going to make a call for ourselves by tomorrow based on the information we know. Regardless, we know that the consultant won't be able to tell us anything more than what we've been told already and will likely just share her experiences of this case, show us case studies and maybe discuss a future 'game plan'.

In any case, we feel we want to decide by tomorrow so we can move on and even if we do have our consultation next week, we can put ourselves in the shoes of parents who are continuing through with this pregnancy. If I don't go through with it, I would like to begin the process much sooner than next Thursday.

I've never felt so helpless and feel like there's no easy way to go about this.

[UnbornMortificado]

Nervous I have no decent advice or experience but I just wanted to say you were in my thoughts.

I have a massive amount of respect for parents bringing up disabled children but I don't know how I'd cope personally. My DD had a few problems at birth (now mostly resolved) and I just seemed to muddle through. Most definitely a one foot in front of the other situation but not as serious as what your looking at.

Please don't feel pushed into doing one thing or another, it's yours and your husbands decision.

[Gingerbreadmam]

if it helps nelly i had meetings with physio, prostethics and ots.

I know it could be different but for my son treatment would have started with the talipes.

i think the method was ponsetti so basically as soon as they can,in the few weeks after birth they will start manipulating the club feet and potting them. this will happen for a while and they will use boots and bar to keep the feet in the right position.

once the feet are in the correct position they may have a small surgical procedure to cut the tendon at the back of the ankle. this is done under local anaesthetic. if i remember rightly this would take about 9-12 months.

After that they would leave them to crawl, learn to walk and develop. They may supply an over the limb prosthetic until they are a little older when they will start the amputation process.

All this depends on the stability of the hip bone as to how many surgeries they would require. Unfortunately, witj pffd the hips bone is quite often affected so requires treatment.

As far as im aware once all the above is done it is just a case of updating the prosthethis once your child grows.

American sites tend to have a lot more user stories on tjem so it is worth a good google.

[Blueskyrain]

In the grand scheme of things, having a short leg won't hugely affect his quality of life, I wouldn't have thought.

I would doubt you'd need to give up work, and when something like that is from birth it's amazing how they adapt.

I have terrible eyesight. A good friend of mine has dodgy hearing and dodgy hips. Another has arthritis from being a young child. Even if your child has no issues at all, then that can change in an instant. There are no guarantees.

You've been told your child's prognosis excellent other than the leg, and he is hovering around the age of viability. He can still have a quality of life that is as good as anyone else's.