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MumSpain
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Joined: 15 Feb 2011

Last Visit: 18 Sep 2011
Posts: 6
Location: SPAIN

PostPosted: August 06 2011, 3:19 PM    Post subject:
New here - sorry it's long!
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We have lived in Spain for 3 1/2 years. Our gorgeous boy Oscar was born here, we found out at our 20 week scan that there was a potential problem with one kidney but nothing to worry about and I was given a repeat scan for 6 weeks time. During our repeat scan a heart defect was discovered and follow up appointments at a major hospital in Valencia confirmed the diagnosis. We decided to have an amnio at this point so that we would have more information at the birth. The results of the amnio were DS with 40% mosaic (although the mosaic result has never been confirmed to us since the birth) Oscar was born full term on 28 July 2010 with AVSD complete and DS. He is now almost 13 months old and we have yet to receive notification of his surgery. He has been prescribed medication since birth namely espirolactona, captopril and Lanocordin (these are the Spanish names) and has never been poorly. The obvious language problems and trying to navigate the Spanish health system has been problematic, most appointments have been difficult to say the least. At the present time we are unable to see anyone unless an emergency until September (August is a holiday month here) at our next appointment (early Sept) we have decided to really push for more information on why surgery has not yet taken place and when we can expect it to! This probably sounds ridiculous that we are not already fully briefed but although usually quite assertive, consultants intimidate and being in Spain with the added language difficultly we have been less than assertive to-date and very trusting. We are now experiencing feelings of concern and are now unsure if we have been treated well or badly, whether the reason Oscarís surgery has been delayed is for his best interest or because we are at the mercy of the system and at the back of the queue! Iím panicking as every story I read points towards heart surgery well before 12 months and Iím also concerned that the left side of Oscarís rib cage juts out more than the right, has anyone else noticed this with their children? Could it be due to the fact that his heart has to work much harder and being a muscle has enlarged quicker than his bone growth? Sorry to have written such a long post, if you are still reading this thank you, any advice or words of wisdom or support would be appreciated. Feeling sad, worried and with the weight of the world on my shoulders tonight. Helen Confused
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earlyam
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Joined: 13 Sep 2008


Last Visit: 27 Sep 2011
Posts: 955
Location: Wiltshire, UK

PostPosted: August 06 2011, 3:51 PM    Post subject:
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Welcome and congratulations on your son Oscar. I'm sorry your having such a fustrating time regarding your son's healthcare. Are you in touch with a local DS support group? Maybe local parents could help you negotiate the healthcare system a little more and share their personal experiences?

Don't know if this would help, but the DSA in the UK have a helpline for parents, maybe they could offer you some support or advice?

http://www.downs-syndrome.org.uk/

My little boy didn't have any heart issues at birth, but there are many mums on here with a wealth of experience and support.

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Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)





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violettesmom
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Last Visit: 27 Sep 2011
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PostPosted: August 06 2011, 4:49 PM    Post subject:
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http://translate.google.com/translate?js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&sl=auto&tl=en&u=http%3A%2F%2Fwww.fcsd.org%2Fca%2F

Welcome - have you contacted this group? I translated the page through google translate - maybe you could connect with a family who has been through this in Spain who also speaks english who would be willing to help you?

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AliMama
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Joined: 08 Aug 2009


Last Visit: 27 Sep 2011
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Location: Illinois

PostPosted: August 07 2011, 1:05 AM    Post subject:
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Welcome! Congratulations on your son! You've come to a wonderful place--hopefully you will find a wealth of information and support, as I have. It sounds like a tough situation to be in--sending cyber {{HUGS}}

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Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-09

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mellysmom
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Last Visit: 27 Sep 2011
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Location: new england

PostPosted: August 07 2011, 10:09 AM    Post subject:
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Welcome to Downsyn. I hope you can find the answers you are looking for.

Michelle
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LinMac
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Last Visit: 27 Sep 2011
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Location: Dublin, Ireland

PostPosted: August 07 2011, 11:08 AM    Post subject:
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Welcome Helen and Oscar.

I have no experience of heart issues so I can't give you any advice.
If you don't speak spanish where are you originally from? Could you take your son to your original country and get a second opinion....just a thought!

Hoping you can get more specific answers to your concerns.

I'm Linda, Mom to Robert and Hannah Kate!

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Linda & John
mom to Hannah Kate (Age 12 ), Robert (Aged 6 - DS)


First day at school
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MumSpain
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Joined: 15 Feb 2011

Last Visit: 18 Sep 2011
Posts: 6
Location: SPAIN

PostPosted: August 07 2011, 4:33 PM    Post subject:
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Thank you for reading my plea for help, today has brought with it a more positive outlook.

Jo - thank you for the DSA link, Iím going to enquire and see if they will give help to an ex-UK resident, itís certainly worth a shot!

Violettesmom Ė you are very kind, thank you for translating this page, connecting with an English speaking family here in Spain is my best way forward. I was praying there maybe someone lurking on this forum that happened to live in my area - that would be too easy! Wink Laughing Iím sure if I keep looking Iíll locate a family or group.

Linda Ė thank you for your warm welcome, we considered moving back to the UK when I was pregnant with Oscar. I secretly worried about the birth and the added problems we would have to face; we do speak some Spanish but not nearly enough to be confident with medical terms. In the end we had little choice, we had invested into our new life and felt that following the surgery Oscar and his big sister Lola (6) would benefit from living in this beautiful environment and have a wonderful life.

Roll on September when we can see our doctor and push for a date, I will keep you posted and continue to read this forum and learn from the wealth of knowledge you guys have.

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Helen mum to Lola 6/7/05, Oscar 28/7/10 ds
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earlyam
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Last Visit: 27 Sep 2011
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Location: Wiltshire, UK

PostPosted: August 08 2011, 2:24 AM    Post subject:
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Hi Helen...so glad you're feeling more positive, hopefully you'll be able to get some answers!

We're going to Valencia next April for a wedding (first time to Spain!) It looks beautiful.

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Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)





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Momof6
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Last Visit: 27 Sep 2011
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Location: Cortland, NY

PostPosted: August 08 2011, 8:59 AM    Post subject:
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Hi Helen and welcome to you and your sweet boy. I'm so glad you have found us. YOu will get so much info and support here from everyone. We all know what your feeling and going through and there will be many who have been right where you are today. I can't wait to hear more from you and watch your little man grow. Huge hugs and many thoughts and prayers that at your next appointment you will get answers you need.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 18, Chelsea 15, Connor 13, Logan 7, Cody 5 & Austin 2 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !
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Karien
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Joined: 26 May 2009


Last Visit: 27 Sep 2011
Posts: 599
Location: Pretoria, South Africa

PostPosted: August 08 2011, 1:57 PM    Post subject:
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Welcome here. I'm sure this site will make up for the lack of support that you receive where you are. Kallen had a VSD but also had a colostomy because of Hirsprungs disease. therefore his cardiologist, postponed his heart operation. They also waited for him to weigh more than 5kg. His heart opp was done at 11 months. If I new then what I know now, I would have pushed for it to be done earlier. It made such a difference to his development, because he had more energy to do things.

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Karien: happily married to Neels
Mom to Ewald (17), Eduan (14), Alvin (10) and KALLEN


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MumSpain
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Joined: 15 Feb 2011

Last Visit: 18 Sep 2011
Posts: 6
Location: SPAIN

PostPosted: August 09 2011, 10:39 AM    Post subject:
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Thanks guys for your replies and welcomes!

Hi Jo - Valencia is a great city to visit, lots to do and see especially in spring when itís not too hot! We live an hour and a half away on the coast but visit the new ĎLa Feí Hospital for Oscarís cardio appointments quite often.

Hi Christine - Iím so glad I found you all, this site is an amazing resource, thereís so much information on here. In the evening once Oscar and Lola are settled, I log in and the next time I look itís the early hours! Smile I'm sure that when life settles down my thirst for knowledge will too.

Hi Karien - thank you for confirming exactly my thoughts, the delayed surgery is having a huge impact on Oscarís development. I take him to whatís called RHB (I think you guys call it PT) each week and after 15 minutes or so he gets tired and upset. They continue with his therapy but once tired there is little point continuing and upsetting him further. At our next appointment, I will be pushing for surgery to be done as soon as possible.

I love looking at all the photos on here, the older kids are so cool and the little ones so adorably cute. I canít wait to introduce Oscar and Lola; so far itís not proving easy Iím still trying to work it out!

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Helen mum to Lola 6/7/05, Oscar 28/7/10 ds
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Tigger
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Last Visit: 22 Sep 2011
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Location: NSW, Australia

PostPosted: August 11 2011, 8:50 PM    Post subject:
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Hi and welcome!! It must be so hard trying to communicate with medical people in another language. It is hard enough in your native language.

I think it is very important that you push for the surgery. Talitha had hers at 4 1/2 months old and I was told that the earlier they have it the better and ideally before they are 2 as if it persists for too long the body kind of adjusts to the situation and then it becomes harder for surgery to be as effective.

Hope you can get something happening soon {{{hugs}}}

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14
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pilgrimhen
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Last Visit: 27 Sep 2011
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Location: Bagdad, Ky.

PostPosted: August 20 2011, 4:28 PM    Post subject:
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Hello Linda -- I hope you are able to get all you need for your son soon.

My daughter just got home from a month studying in Spain and she mentioned that she saw people with DS everywhere while there (Barcelona). It made me wonder why that was - maybe they are more accepting over there, or maybe their healthcare is better or more advanced? So hopefully you will be able to find support and encouragement in Spain!

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~~Bayley~~
Elijah - 21, Gracie - 19, Anna Joy - 17, Rose - 14, Zeke - 12, Daniel (5/11/04 - DS)
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MumSpain
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Last Visit: 18 Sep 2011
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PostPosted: September 15 2011, 5:16 PM    Post subject:
Oscar Update
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Sorry I haven't been around, here is an update on Oscar's amazing journey.
We didn't need to wait for our September cardio appointment, out of the blue we got a call and within a week Oscar had the most difficult day of his young life. After 5 agonising hours, two surgeon's emerged from theatre with news that surgery went better than expected and Oscar was doing well. He was immedately transferred to ICU for what we expected to be 4 days and then to a ward for an expected 10 days. His recovery was so quick, the day after the op he looked wonderful and on each visit tubes disappeared and machines were turned off. After only two days he was transferred onto a ward and after a further two days we were home! I can hardly believe his surgery took place on the 7th and I am writing this on the 15th. His scar looks fantastic and is healing well; he is a different baby, happier, full of energy, eating and enjoying his food much more than before. We are so grateful to the Spanish health system, they have some amazingly talented people and were truly wonderful during a very difficult time - but baby Oscar is the real star!!!! Laughing

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Helen mum to Lola 6/7/05, Oscar 28/7/10 ds
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earlyam
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Location: Wiltshire, UK

PostPosted: September 18 2011, 3:37 AM    Post subject:
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So pleased Oscar has had his op...sounds like he is doing amazing...you must be so proud of him!

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Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)





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shab2010
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Joined: 14 Sep 2011

Last Visit: 23 Sep 2011
Posts: 38

PostPosted: September 18 2011, 3:51 AM    Post subject:
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hey i know you posted this over a month ago but i just wanted to add this, my son also went threw open heart surgery and recovered just the same as ur son, these babys are amazing, yeah he went for surgery it was 9 awful hours the vsd was larger than what they expected, but they did it, the first day wasnt nice he was all swolen ands covered in wires but the next day same as you he looked amazing, he was sent on the ward and carried on recoving so quick, well he had surgery on the tuesday morning and home by sunday afternoon so yeah i was shocked an happy of course, its the same as you he strated to progress so well after the surgery so active no breathing problems anymore and full of life, now we have been for after check ups and they dont need to see him until he 4 years old which is great,
i wanna say youve done so well to go threw it i know the feeling it was very hard,
hats off to any one who has to take there babys to surgery
weve bin threw it 5 times and hes only 18 months
and you never get used to it,
wish i could have come on this site a little bit earlier x

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MumSpain
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Joined: 15 Feb 2011

Last Visit: 18 Sep 2011
Posts: 6
Location: SPAIN

PostPosted: September 18 2011, 7:57 AM    Post subject:
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Thanks Jo, I'm very proud of the little chap, he' a fighter and my guess is a live wire once up and about xx Laughing

Thanks shab2010 - it must have been a wonderful feeling when they said they only needed to see him when he turns 4! hope we get similar news at our check up next month. To have been through 5 ops in 18 months is really tough, your little guy is a real star xx

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Helen mum to Lola 6/7/05, Oscar 28/7/10 ds
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shab2010
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PostPosted: September 18 2011, 11:38 AM    Post subject:
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There really shocking these baby's, your little wil shock you as well I hope, I wish you all the best seriously, not like you'll need it there to strong xx
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