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experiences with very premature / disabled child

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experiences with very premature / disabled child

Postby jules2 » Tue Nov 24, 2009 05:01 pm

Hi,

I am trying to decide whether or not I am brave enough to TTC again, after two losses within 6 months. Despite my miscarriage and stillbirth, my greatest fear at the moment is having to deliver very early and having a very severely disabled child, and how I could possibly cope if that happened. I have experienced this in my family - my Dad had a very severe stroke that left him totally disabled and dependent - blind, doubly incontinent, no mobility, dementia, behavioural problems etc (he is now dead but lived quite a long time in this state, I think this is why I fear disability so greatly - I know just how awful it can be)

Please don't misunderstand me, I am sure I would love my child regardless, but I just have no idea how I could cope if this happened. We don't have any family support, and there is little state support available either - would I end up giving up my career to be a full-time carer? Would I just be forever exhausted, overwhelmed, and going through a different type of grief?

I know no-one can answer these questions for me, but I would really like to hear from anyone who has had a very early delivery (say under 28-30 weeks) or very severely disabled child. How is your life now? Does it just feel like an endless round of hospital appointments? With my Dad, although I totally understood that his prognosis was terrible, I could never really accept that and spent months on end off work, spending all my time in the hospital, and trying to encourage him with physio, even though I could see it was to no real effect. I think I might be the same with a disabled child. I'm not someone who accepts things easily and I put up a real fight; I wonder if this is really not the right personality for raising a disabled child, but I just don't know what that might be like in practice.

This is a bit of a ramble, but I hope you can understand, and thanks in advance for any replies.
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Re : experiences with very premature / disabled child

Postby kara » Tue Nov 24, 2009 06:12 pm

This is the information I received from my hospital about survival and disability rates for preemie's. Hopefully it's helpful.

What are the chances that my baby will have a significant disability or handicap?
For any infant, IT IS IMPOSSIBLE TO PREDICT AHEAD OF TIME THE LIKELIHOOD OF A SIGNIFICANT HANDICAP (moderate or severe mental retardation, inability to walk without assistance, blindness or deafness). However, some factors increase the RISK of these handicaps:
Extreme prematurity, especially infants of 23-24 weeks of gestation at birth. At these gestations the risk is about 50%. As gestational age increases, the chances of being normal or nearly normal increases dramatically and is similar to the chances for survival. This means if survival is 80%, then about 80% of those who survive are free of major disability. Thus, with a 80% survival, 20% will die, about 64% will be healthy and 16% will have major disabilities.
Identifiable brain abnormalities. These may occur before birth or in the nursery. These include large intraventricular hemorrhages and/or periventricular leukomalacia.
Babies who have been the sickest and/or remained sick for long periods of time (several weeks).
Most children with a significant disabilities enjoy life and are a source of pleasure to their parents.


What are the chances that my baby will have a minor disability?
Minor disabilities occur in about 15% of children born on time. They occur more often in premature infants, about half of infants weighing less than 3 1/2 pounds at birth. Many of these are not appreciated until school age. Common minor disabilities include short attention span; specific learning problems in school such as difficulty with math or reading; poorer than average coordination, especially for games requiring eye-hand coordination like hitting a ball; and needing glasses at an early age. Children with minor disabilities usually lead normal lives. Early identification of these problems helps make learning easier.


Our daughter was born at 31 weeks, but essentially stopped growing around 28 or 29 weeks. She is perfectly normal except for Sensory Processing Disorder, which is considered a minor disabilit. We "manage" with Occupational Therapy and lots of patience - of which I am naturally deficient. Around here, we have full termers with disabilities, and 25 weekers who are normal....and everything in between. I understand your concerns and they are very valid. I would have a discussion with a neonatologist or your MFM about the statistics they see in their practice.
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Re : experiences with very premature / disabled child

Postby jamie w » Tue Nov 24, 2009 09:54 pm

My daughter was not a preemie. She was born at 38 weeks. She has mild/moderate cerebral palsy. She was diagnosed IIRC around 5-6 months when she was not using her left side. Has it been hard? Unequivocally I scream YES! It has been a road I was not prepared for and never expected to find myself on. Would I do it all over again? Unequivocally I scream YES! My daughter has taught me more than I ever thought was possible. She has shown me what it is to not give up. She has taught me patience, empathy, understanding, and love beyond what I thought was possible. She has shown me I am stronger than I ever knew. In the beginning it was continuous Dr appts but that has slowed down a little bit. She just recently had a Gbutton placed and is now mostly tube fed. That has been a learning process also. My husband and I both still work full time. He is a firefighter and I am a nurse. He works 24 hrs on/48 hrs off and I work 12 hour shifts 3 days a week. We are able to work our schedules where 1 of us is always home. We also have a dear dear friend/babysitter who helps. I have some family around here but they are not of much help. My MIL does help out though and for that I am sooo grateful. If we did not have some help it would be much harder. It is expensive!! Luckily we have great health insurance that pays 90% in network. Even the 10% that is ours can be overwhelming though. We make too much for SSI or anything like that but are currently applying for a program that will put Medicaid as a secondary. It is also very hard balancing the needs of our special kid with that of our typical kid. So yes, we are exhausted beyond what words can express. There are times when I think I cannot possibly go on or take another step but somehow together we keep going. This life is certainly not what I would have chosen for my daughter, myself, my husband, or my DD but it was handed to us and we have to make the most of what we have. Nobody can be prepared for this type of thing to happen in your life no matter how much you think you are/might be. When it is dealt to you, you just deal with it because really, you don't have a choice. Take a look at my blog for more in depth stuff and also for links to other kids who were preemies and some more disabled than mine. May you find peace with whatever you decide to do.
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Re : experiences with very premature / disabled child

Postby kdreher » Wed Nov 25, 2009 11:26 am

I know the fears....but I will tell you at the age of 39 I had Michael. He was born at 32 weeks and weighed 2 lbs 10 oz. His apgars were 9 at birth. While he was tiny thankfully he didn't have lung issues. He was breathing room air the first day, put on oxygen over time and then back off. He did suffer a bout of NEC but recovered in less than 2 wks w/o surgery. Other than a mild-moderate hearing loss in his right ear, and asthma he is just fine. He is behind with some things but no disabilities. Just becausse they might be small doesn't mean disability.
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Re : experiences with very premature / disabled child

Postby jacobkaden » Wed Nov 25, 2009 10:46 pm

You are very wise to consider this scenario. I echo everything Jamie has said. This is not the life I thought I would have and certainly not the life I would have chosen for our family. With that said, I would much, much rather have our beautiful boy and only child here with us, than no child at all:( The other side of "disability" is that these children have so many other beautiful gifts that they bring to everyone who knows them! I feel truly blessed to be Jacob's Mom and I feel I have benefitted far more than he has from our relationship. I love Jacob exactly as he is:)
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Re : experiences with very premature / disabled child

Postby jfindley » Thu Nov 26, 2009 02:31 am

I'd like to echo what Kristine said. Being born very premature and small doesn't necessarily mean disabled. My son was born 1 lb 13oz at 26+1 weeks and today he is 1 years old and totally healthy physically and developmentally. It has certainly been a long, hard road getting here (3 months in NICU and tons of doc appts) but I am so glad I am here. I am weighing the same thoughts about TTC again also. Best wished to you!
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Re : experiences with very premature / disabled child

Postby jfindley » Thu Nov 26, 2009 01:47 pm

One other thing to mention, I would not consider another pregnancy without having access to our son's same neonatologist again. His personal sucess rate with micropreemies was much higher than the national averages, as was our nicu's too. Knowing now about all of the things that occurr in the NICU that can affect developmental outcomes, aside from the circumstances of the birth itsef
, I would defineately reccommend meeting and interviewing your hospital's NICU team if possible.
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Re : experiences with very premature / disabled child

Postby love_the_daschies » Thu Nov 26, 2009 11:21 pm

I have no experience with this - but it was also something we weighed when deciding to try again. We looked at odds - and just decided that if we delivered premature and face a disability - we will have to do whatever it takes to deal with the situation as best we can.

We went by what we would regret the most. Of course if we have a child with a severe disability I am sure we will have regrets now and then , but with never trying again we would always have regrets. I know I am not phrasing this well - but we felt we would rather deal with the risk of hardship rather than the risk of nothing.

Of course this is all hypothetical right now and the women who have been in this situation have so much more credence since they are actually living this. I feel, if need be, I can rise up and be as strong as them - though I know for sure it will not be easy.

Good luck with your decision.
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Re : experiences with very premature / disabled child

Postby jules2 » Fri Nov 27, 2009 04:59 am

Thanks to all for your comments.

I very much feel that I have been through the worst already, and there is unlikely to be anything as hard as losing my daughter at 26 weeks (except losing another one, maybe), but I also fear having a child with, say, severe cerebral palsy. I know that many micro-premies will do well. Minor disabilities don't worry me too much.

I also don't have time on my side any more; in 18 months time I will be 40! I feel so young but I'm not. I have still been getting pregnant very easily up till now, but it may be that I never get there, or just keep having miscarriages and eventually get 'timed out anyway'. If I do try again it will be next year now, as I am awaiting a teratogenic kidney procedure at the moment. This forced wait is making me reconsider everything, and my feelings as to whether I could cope with severe disability or another loss fluctuate all the time. I guess I am just so sad that my daughter died at 26 weeks as I would never even consider TTC again if she had survived; I had not realised how many survivors there would be at that early gestation until I came on here.

Thanks to all again

Jules x

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Re : experiences with very premature / disabled child

Postby holiday » Tue Dec 01, 2009 08:55 am

You are selling your self short. I would have thought I would have never been able to go thru what I have with my baby (born at 24 weeks). Never in a millions years would I have thought I could handle it.. but I have, and you do. It just clicks. You will be surprised by your strength and surprised by the love you will feel for your child regardless of their health.
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