RESPONSES TO A NEW BORN BABY WITH DOWN SYNDROME.

Catergories on this web page: 1…Siblings: Their thoughts and feelings about Jacob, a newboen baby with Down Syndrome. 2…Responses to a Newborn with Down Syndrome by those Outside the Nuclear Family. 3…Concerned about the impact of a newborn with Down Syndrome on the family? Husband wants to get rid of the baby because of the Down Syndrome? Husband doesn’t want a baby period, no way, never?

1…Siblings: Their thoughts and feelings about Jacob, when Jacob was a newborn baby with Down Syndrome.

What do they have to say about having a brother with Down Syndrome?

Like our ducks, we stick together and protect and love each other.

Donald(111) (12yrs): “He’s the best. I like everything about him.”

Christopher (11yrs): “I want to have a baby just like Jacob, because he is so cute. He’s the best brother in the world and cutest and, he’s really smart.”

Jonathan (9yrs): “I reckon he’s a good brother and he’s cute and, a good brother to play with and, I think he’s the smartest baby in the world and his laugh is very cool. “

Hannah (5yrs): “He’s great, because he’s so smart and cute.”

Jacob (17months): In the words of the great philosophers, life is about the pursuit of happiness, so I’ve already attained life’s greatest desire – I’m already happy!!

Everyone in Family: Jacob is an extremely over the top one cool dude. His endearing qualities, such as wanting to be around people all the time, being happy nearly all the time and being happy in interacting with everyone, has made him an enormous hit. His bothers and sister sometimes don’t want to share him and will fight over who is going to play with him. We find him a great joy to be with most of the time – he’s so cuddly and enjoys his life so much and; he loves the rough and tumble play, the tickles and all that sort of stuff.

2…Responses to a Newborn baby with Down Syndrome by those Outside the Nuclear Family:

Having had four kids before Jacob, we certainly noticed the difference in how people respondedwhen they found out Jacob was born with Down Syndrome.

One very obvious response from some friends was just straight out avoidance, the next was just how few the congratulatory expressions, cards and presents were. When we bumped into some people their uneasiness about Jacob was very apparent, with excuses given for not visiting etc. Having a Down Syndrome baby was like having leprosy – few people were willing to come near. One leader of a Down Syndrome support group got their nose out of joint with us, because she considered it criminal to use the metabolic therapy. Some relatives were iffy about having a baby with Down Syndrome – enough said. All very sad and disheartening – the ignorance of people can be so great sometimes – Having a Down Syndrome baby is not really any different to having any other baby. Babies with Down Syndrome should receive the same welcome into the world as any other baby. My condolences if this happens/happened to you. Fortunately, it does NOT happen to everyone.

A very small number were supportive, but most of our good support came from internet newsgroups and Jacob’s surviving grand parents.

If you have just had a baby with Down Syndrome or about to, then congratulations to you for having a newborn baby in your midst; yes, you will likely be grieving for some time, but you have a wonderful new life to look after now, one that will hopefully bring you the joy and happiness that Jacob and all our others have brought to us. As time passes, the grieving is likely to lessen, it has for us, while the focus on the joy and happiness your kid is bringing to you and your family becomes more apparent to you. I thought I would just update this, it’s now been over five years since Jacob was born, we still grieve and worry about what is to come – with school and so on. I can honestly say, however, that Jacob was a very lovable baby and is a very lovable kid, who endears himself to others very well. The Down Syndrome is part of who he is – I know he is frustrated by not being able to do some things that other’s do so easily, but he perseveres and gets there in the end. We love him dearly and he reciprocates that love. I am glad we gave birth to him.

If you know someone who has or will have a kid with Down Syndrome, then be there for them, congratulate them and, if anything, be even more welcoming for this new infant than for any other.

3… When the spouse disagrees and you want to keep the baby with Down Syndrome, not consider abortion nor adoption:

Thank you so much for your reply.

The specialist is worried about Down Syndrome: The ultrasound showed the stomach was smaller than he liked and the he said the nose measured smaller than he wanted it too as well. Everything else was fine on the blood tests and ultrasound.

I am curious as to if you know approximately how often blood work comes back looking great but then Down Syndrome does occur? There seems to be a lot of information on out there on if its not so good and Down Syndrome does not occur.

I just want to be prepared for everything. To be completely honest with you, I am already in love with this baby and just want to be prepared for anything but the thing causing my concern is that my husband does not feel the same way and that is causing me great anxiety. I don’t want to have to make that choice between my husband or my baby. I want to be as prepared as possible.

Can you direct me to some uplifting websites that tell the success stories of Down Syndrome also? I need some hard evidence to show my husband that should our baby have Down Syndrome it’s not the end of the world and much Joy and happiness can come from her life.

Thank you

Answer to Down Syndorme query:

I’m sorry to hear of your situation. There is no easy answer. Some adult parents get caught up in the disability of Down Syndrome and fail to see beyond there own needs – this can happen to anyone – but if adults get too caught up in their own needs, then divorce has been found more likely in those who have kids with disability. I’m not too sure if finding web sites that are overly positive are going to be realistic to your situation – there is little point in getting agreement from a spouse by showing just the positives, because the spouse is free to change their mind after the birth when the negatives become apparent – when the real life of sharing with a Down Syndrome kid becomes a reality for life and very real.

Also, on another note, it is possible that if there is a genetic problem present that it may NOT be Down Syndrome, so it is possible your preparation MAY be flawed on that count. The nose check is still not quite accepted, but looks like a good indicator that something may be wrong genetically. To learn more about this, please check out our page on Down Syndrome pregnancy testing. Blood tests are very much a numbers game based on chemicals in the blood – we all have them, so we are talking about changes in their quantity – of course, some mothers to be may have higher or lower concentrations to start with, or the blood sample taken at the wrong time or something – that is why the Down Syndrome blood test tend not to be hard and conclusive in their results. I believe I give specific figures for false negatives – good blood test outcomes, but with a kid with Down Syndrome later born – on the Down Syndorme Pregnancy testing page.

But to get back to the issues of having a kid with Down Syndrome: Raising a kid with Down Syndrome is more challenging, more difficult and more time consuming. Jacob does give back alot more love and is one very valued member of our household. When our teenagers want to share something they always go looking for Jacob – it may be to play with on the trampoline, watch a movie … So, in this way Jacob with his Down Syndrome adds to the stability and happiness of the family. His love is very unconditional and his laugh and sense of humour is beautiful. Down Syndrome isn’t all bad.

On the down side of Down Syndrome, one often has to be prepared to fight for their right of inclusion, tolerate many trips to the doctor and trips to the hospital, visits with speech therapists, occupational therapists … by the sound of it, you may be lucky enough to have a baby almost as healthy as Jacob, even if the Down Syndrome is present – if one of the Down Syndrome stomach problems is present, surgery can normally work – you can check out our page on Down Syndrome health issues for more.

Down Syndrome is also a numbers game, particularly with IQ. Jacob functions well, but about half or more would not I think function as well.

One of the big issues with Down Syndrome is toileting and potty training, because it can often take twice as long to become toilet trained. As a rule of thumb, I’m told that 10 years of age is the expected time frame for someone with Down Syndrome. So, this is really a big issue – cleaning poo and wee for possibly ten years or more. Certainly the older they get the more they can hold on – which means less accidents, but bigger messes when they do happen. Then there’s the other issues – like furniture being urinated on, poo getting rubbed into the carpet and lounge chair. One can often anticipate throwing out the lounge room furniture and tearing out the carpet and underfelt when they are finally toilet trained. However, after ten years, such material possessions are just about at the end of their life span anyway.

BUT, although ten years may seem a long time, it will seem to go fast – life is pretty hectic in these modern days – certainly, if one had two non Down Syndrome kids spaced five years apart, then cleaning wee and poo for ten years would be expected and normal.

There is the grief and fear process as well – what will happen to my kid? Should I home school? What life is ahead of him her? … the list goes on, BUT, Carolyn and I walk the walk, so we have the right to talk the talk. Jacob is part of our family, we love him, he loves us. NOT having Jacob would have deprived us of sharing his valuable life – when I pick him up from school, he is in grade 1 now (7 years old), he greets me with the most joyfull ” Daddy ” you could imagine then rushes to get to me and we have a hug before leaving; I anticipate this every day I go to get him and if you were to watch me, you would see the joyful anticipation I have as I wait for him. It is really, really, really one of the high spots of my day. Non Down Syndrome kids don’t give back in this way – their parents will never know the joy a kid with Down Syndrome can give, which is far greater than that of a non Down Syndrome kid I’ve found. They may celebrate at university graduation and the like, but we have a special joy every day of our life, because of the Down Syndrome.

With Carolyn and I, we chose not to have the amnio to check for Down Syndrome, as we both agreed by then, he was our kid, our gift from God like our other kids, that all kids are a blessing from God, not just the non Down Syndrome ones and the diagnosis of Down Syndrome was irrelevant to us for that reason – devastating, but irrelevant as far as keeping him goes.  Abortion, no way.

We certainly did NOT want to be responsible for killing one of our kids and then trying to justify it – there is a normal consequence to killing and that is knowing you did it; then you have to live with it, forever. You draw the line in the sand and say, at this line I devalue life.

There are consequences that will possibly impact on your family, no matter what you and your spouse decide – Not having the baby with Down Syndrome may have potentially devastating consequences as well. How do you way up the pro’s and con’s? I don’t know, no crystal ball, but at least I sleep easy at night without guilt and regret and Jacob, so far has had a pretty good life like most kids. 🙂 Matter of fact, Jacob is now 7 years old and when we got to the school early, Jacob joined in chasings with the rest of the boys and girls who were waiting.

If I can help further with more suggestions, please let me know.

Kind regards and all the best for your future.

Donald.

Further Response to Down Syndrome query:

Thank you so much for your response. I absolutely agree with what you said regarding the positive information. I appreciate the fact that you gave both the good and the not so good info. My husband is only concentrating on the not so good information and not looking at the positive at all. We have several kids now and he is a wonderful husband and father so this is very difficult for him I know. Your information and website are a blessing. Thank you for the time you have taken to answer my questions.

Further Answer to Down Syndrome query:

There are some more ideas I have thought about that may help, or may make the situation worse, depending on how it is handled.

One basic idea is that would you terminate the life of one of the other kids if they sufferred brain damage? I take it that Christianity isn’t part of your life? It’s hard when morals are arbitrarily determined based on what seems right at the time. From a Christian perspective, the possible diagnosis of Down Syndrome meant new battle lines with the devil. I fasted for thirty days, prayed much and still do for the removal and relief of the Down Syndrome. I didn’t just accept the Down Syndrome, I actively fought against it in the spirit realm and still do.

Secondly, I know where your spouse may be coming from in relation to a Down Syndrome pregnancy or any other pregnancy, he is possibly entering the middle or end phase of his working life, job advancement or insecurity, retirement and superannuation payouts and the like on the horizon, and the thought of being tied down through another baby or a baby with Down Syndrome, means all those future plans may be getting pushed aside or made inadequate. Remember though, babies with Down Syndrome do grow up and in today’s modern society, with proper treatment and care, the future of adults with Down Syndrome looks quite good.

It’s perhaps an area worth exploring – what is hubby thinking he will lose through having this baby with Down Syndrome? Are there areas where compromise can be reached or areas of concern which can be relieved or lessened?

I know with me that being able to provide for my family was a big issue with just about every pregnancy !!!

AN ARGUMENT FOR HAVING A BABY WHEN THE FATHER IS RELUCTANT:

The big persuassion which Carolyn has used on me which worked, was the argument that she wanted to have a baby or another baby to fulfill her needs to be a mother, just like I needed to provide for my family and advance in my occupation to fulfill my needs. In hindsight, she was saying these are my needs, you are fullfilling your needs, but what about mine. An argument from the heart. What can I say, I now have five kids, would have been 17 or so if all had lived..

Also, write back and let me know how things work out. I hope the added suggestions above are helpful also.

Kind regards,

Donald.

FURTHER THOUGHTS on having a baby with Down Syndrome:

If there is a push to adoption, at least the life is not taken and you may be able to maintain some contact. You will miss most of the good stuff though. You could possibly also use the informationabove to argue against it.