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?

How are you doing op, did you make your decision?

Thanks so much for the insight Gingerbreadmam. I had a growth scan earlier this week and unfortunately baby's left femur is still significantly shorter than the right. However, now that the consultant has determined the rate of growth, he said that there's no need for me to come in weekly, which I think will just help DH and I just to focus on the pregnancy and get ready for DD's arrival instead of just focusing on the technicalities surrounding it. So, my next scan will be at the 30-week mark, so beginning May. At my scan I did keep asking about the hip and whether it was aligned/functioning well and the consultant says it seems to be, which is good news (though I accept that this may change when she is born and starts crawling around).

It looks like we'll be following a similar course of action. We are still waiting for our consultation with the orthopaedic surgeon to be rescheduled but now that we're not on any particular timeline (as long as we see her before the baby's birth), that's absolutely fine. In terms of determining what exactly will be done in terms of treatment for DD, it's all a waiting game to see how she turns out when she's born. I'm just looking forward to having her in my arms

Hi, Nelly, I too have no advice, but sending best wishes

I know a young woman in her 20s who was born with a severe abnormality of one of her legs and ultimately had the 'faulty' leg amputated at the age of one or thereabouts. She wears a prosthesis and is otherwise entirely well. She has a child herself who has no physical problems.

Obviously, how things turned out for her mean nothing for your child, but just wanted to add a positive story.

Very different circumstances for me, as my son was born with a life limiting condition but we had no idea until he was here.
He had several surgeries, medical procedures when a baby, child which were painful and harrowing for us as parents.
He however does not remember most of his surgeries and now as a teen takes life very much in his stride and is not defined by his condition. He has never known any different and physio, hospital appointments for not phase him.
He is himself first and foremost and we as a family all acknowledge and voice Ds has a Condition it does not have him.
Best wishes for the rest of your pregnancy and a smooth delivery of your DD. She will show you the way, just follow and support. Xx

Thanks PacificDogwod, it's so nice to hear positive stories like this. I generally always look at worst case scenarios so I don't get disappointed, but I'm reassured by our consultants words that our DD's prognosis is otherwise excellent. The story of your friend is an example of just that

"I have a massive amount of respect for parents bringing up disabled children but I don't know how I'd cope personally".

We "cope" because we have no choice to cope. There are our kids and in essence we can't put them back up our vaginas ! As parents, we learn, we adapt. It is hard, but you have two choices, you either declare to the world your life is over and jump out of the window or you say ok we will keep on going, there would be bumps along the road. But we will keep on going.

Op, slightly different as my DS has Autistic tendencies and severe verbal dyspraxia. You don't have to give up work if you have your DS (is it a boy ?). I managed to study throughout DS younger years and I'm now working. Childcare has never issue for me, unless I know that the staff are able to accommodate DS needs.

A girl in my uni course was born without an arm...other than that she was fine, very sociable and I was a bit envious of her as she was so talented (art wise). She did tell me that she was bullied a bit when she was younger but she did say that her parents were always behind her back, they saw her as her daughter not someone who had a disfigurement.

Oh... I know this is a long way oh way but I know a therapy practice which is really good for physio and occupational therapy. It's Kikis clinic in Clapham. Very very good.

Thanks notgivingin789, you and I are on the same wavelength and although DD (it's a girl :)) isn't here yet, this is the approach I'm taking already. While DH and I did have a choice to continue through with the pregnancy or not, we are completely at peace with our decision to keep her and in fact, are so excited and can't wait to have her in our arms. I think the fact that we knew what we were dealing with earlier on will just prepare us mentally and emotionally, compared with many parents who don't have that opportunity. Like you said, there will inevitably be challenges along the way but we will have to cope because we have no choice - and that's not a negative thing at all!

That is really good to know, re: working. It is still something that is on my mind, i.e. whether I'll be able to manage. But in our case, should DD require an amputation and be fitted with a prosthetic, there will be no immediate course of action, at least not in the first year - we'll just have time to adjust to being parents in the first place before we enter into that territory as my consultant has said, which really puts me at ease.

Aww it's a girl !

Yep OP! I was 15/16 when I had DS. I was a scared, very young mum and I wished I had known (though you can't detect DS needs before birth) about his difficulties so I could of mentally prepare. Word of advice and I wished someone gave this to me ! But when your DD comes, enjoy her. With DS, I spent many years worrying, kept on comparing him to peers his similar age, feeling spiteful but I forgot to enjoy him. His 7 and we are doing much more of that now.

It may help to follow similar parents going through the same thing via YouTube, Facebook ??

Regarding working, I'm finding it difficult as DS is growing up, not because of childcare but because he has things like homework, parent evenings, social things outside school which I didn't have to do before when he was much young. But that's it.