# Kayla is here, born with vacterl syndrome



## Styling

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On 4/06/2011 after they did a ammo testAfter that, they did a nst test to just cheak on baby Kayla and she failed it so they took her c-section. I waiting laying on the table and when they said here she comes all I could do was pray to hear her cry. She did and I am telling ya hearing your child dry for the 1st tme is something amazing.Since we knew already Kayla has VACTERL Syndrome. The nicu doctor was in the room ready to take Kayla the second she was born. They allowed daddy to see her for a min before taking her away. 
Recover is going pretty good. Now I ahve had 2 children naturl births and 1 c-section I can say the c-section is the worse. I could not even turn over in bed, or get up out of bed without hurting. Walking more then 10 mnins cause the tummy area to hurt something bad. Its does it better after a few days. 

I got two see baby Kayla about 2 hours after she was born and she was perfect to me. Here are Kayla problems, She is still at the hosiptal 1 hour and 15 mins from my house and I go down to see her as much as possibles. 
She was able to breath on her own with very little help. On 4/8/2011 she had surgery for a colostomy. A colostomy is a surgically created intestinal opening on the abdominal wall. This allows Kayla to have normal bowel movements and relieves the bowel obstruction.The fliud on her brain at this time is not worth having a shunt be in yet, and possible she will not ever have to a shunt.She had to be put under the lights but as of today she was able to move back to a regular bed. They did a a heart EOG the day she was born and on 4/11/2011 and it shows some heart defects, they were waiting another week before doing another one, but today the doctors took her blood pressure in her arms and legs, and the arms were much higher, so he has order another EOG to be done in the morning. The easiest way to explain Kayla syndrome. ( Vacterl Syndrome) is to break it down by letter and explai ehat parts she has. , so Here it is.

Vacterl and what Kayla has.

V stands for vertebrae, which are the bones of the spinal column. (Kayla's spine is like cheakers, they are not line up like they should be)

A stands for imperforate anus (she has this and has had to have her colon brought up to the abdominal wall and a bag attached until she gets surgery to open up the anus wall.)

C is added to the acronym to denote cardiac anomalies. Heart defects. ( Kayla had PDA VSD and the aorta is small, PDA is a blood vessel that should close after birth on its own, but doesn't. VSD In the lower chamber of the heart there are valves that should iopen and close, one of hers does not close fully, allowing back flow. A small Aorta cause poor blood flow in the lower body, as well as other things, this can cause differents probelms)

TE stands for tracheoesophageal fistula. ( kayla so far doesn not have this, they are keeping a cheak on it incase she has a rare form.)

R stands for renal or kidney anomalies. ( kayla has only one kidney, the right one.)

L is often added to stand for limb anomalies. ( kayla has hips, feet, leg anomalies, as well as the extra toe)

Kayla is doing really good, and there will be struggles for her, but I know things could be much worse. She maybe not be perfect in other eyes so say, but she is so much more the perfect to us.
https://i249.photobucket.com/albums/gg205/tabbycat_019/100_0249-1.jpg
https://i249.photobucket.com/albums/gg205/tabbycat_019/100_0267.jpg


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## nemo1

Congrats hun! 

I am glad your little angel is doing well and pray she continues to do well and taken home soon. 

I've never heard of this vacterl syndrome. There are so many things out there we aren't aware of. 

Anyway all the best to you and your family. xx


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## going_crazy

Aww.... Congratulations, she looks beautiful! I'm sure she will continue to amaze you and I hope she makes wonderful progress xxxx


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## leeni

congratulations! kayla is beautiful xxx


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## Angelface

She's absolutely gorgeous !!! Xx


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## krissy1984

Congratulations, she is lovely xx


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## Andypanda6570

:cloud9: She is absolutely beautiful/ Congrats!!!!
I hope she continues to improve and comes home right away.
You are so blessed :hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs:


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## evasmum

Congratulations, Kayla is beautiful and perfect, I hope she is home with you soon.

Do you know that there is a special needs support board on this forum, I am sure there are lots of women on there whose children spent time in NICU.

:hugs:


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## Tegans Mama

Congratulations! She is beautiful :hugs: xxxxx


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## mafiamom

congratulations. she is absolutely beautiful. i pray she continues to do well and hope she amazes her docs in the days, months and years to come :)


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## andella95

She really is beautiful!


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## fluffyblue

She is beautiful hunni, well done hope she continues to be a little fighter xxx


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## beatrix

She's beautiful!


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## doddy0402

she is lovely!!x


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## Styling

evasmum said:


> Congratulations, Kayla is beautiful and perfect, I hope she is home with you soon.
> 
> Do you know that there is a special needs support board on this forum, I am sure there are lots of women on there whose children spent time in NICU.
> 
> :hugs:

I did not know that, I have not seen it but I will fo find it now..

Kayla is doing good, she will ahve heart surgery Tuesday, because the aorta is to small/narrowed. With all that is going on, I would say she is doing great and really amazed with her


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## Raggydoll

Congratulations, Kayla is beautiful. I hope her surgery goes well Tuesday. :hugs:


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## nadinek

congrats, she is so beautiful and perfect. hope everything goes well. xxx


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## Styling

Thank everyone:)


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## srm0421

She is so beautiful. My son was born with Cadual Regression Syndrome with over lapping V.A.C.T.R.E.L. factors syndrome. He was born early (30 weeks) and passed away 2 hours after birth. She looks much better on the outside than my son did (lower extremities) and my son had all 6 of the V.A.C.T.R.E.L. factors syndrome and almost the most severe of each. I am so happy to hear she is alive and doing good. My heart goes out to you for having to be without her but she sounds like she is doing good. Thank you for posting, I look for any thing that is similar to my son and to know others can survive this disorder is a hope I hold on to.


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## tassiemum

Oh my gosh she is so beautiful! Congratulations! They thought my son had VACTERL too but it turned out to be something called Fanconi Anemia. Its time for you to relax and enjoy your daughter because finding all these problems is a stressful time! But it looks like she is doing well and she is perfect.


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## BeesBella

Beautiful little girl ! Congrats !!!


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## xxClaire_24xx

OMG look at all her hair!!!! she sounds like she is doing very well, how are you feeling as I know that a section is hard work and also leaving a baby in special care is so emotional xx


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## Floralaura

CONGRATULATIONS! She is lovely and I hope she contiunes to do well and is home with you real soon..x


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## mummylove

she is gorgeous hun glad shes doing ok all the best for her full recovery


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## KookyK

She's beautiful. Congratulations.


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## kdt8951

Kayla is beautiful, I hope she is well enough to come home soon x


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## emmi26

shes so beautiful hun congrats and i hope she continues to do brilliantly which im sure she will she looks a strong little lady xx


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## Nic1107

Congratulations! She is lovely :)


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## Vicyi

She is gorgeous, congrats! xx


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## Mumof42009

Congrats she's lovely, I hope she continues to progress and get better.xx


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## going_crazy

Thinking of you hun, hope Kayla's surgery went ok xxxxx :hugs:


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## Mommy's Angel

She is such a little beautiful doll! She has a whole lot of hair. Very cute! I'm so sorry she has to go through so much right now, but it sounds like so much can be done to help her in the upcoming months and years to help her with the latest technology and medicines. God created her in HIS image. There is absolutely NOTHING that's imperfect about her hunny. She's beautiful in EVERY way and her life has already touched so many as I'm sure her testimony for years to come will be a blessing to so many.

What a beautiful little gift you have. :happydance: Congrats little momma. :flower:


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## Siyren

big congratulations sweetie, she's stunning!
let us know how her heart surgery goes!


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## hudz26

Awww what a beautiful baby girl you have!!! Hope she comes home real soon!!! xx


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## Chaos

She is absolutely beautiful .. look at all that dark hair!!(my DD was bald till 11 months! lol) Glad she's doing so well despite the difficulties :)


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## mummykel1984

hello< congrats on kayla shes beautiful!! i am mummy to harry hes 1 next week!!! harry was born vacterl, he has tracheoesophageal fistula, PDA and PFO and also onli has one kidney.....would love to catch up some time xx


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## mommytoTandE

She is beautiful!!! :)


I pray she strives everyday and is home soon!


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## lizziedripping

OMG what a beautiful little girl. Keep fighting for her hun, this little cherub is an absolute gift xxx


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## bradshaw

Beaytiful baby girl- hugs to you all, good luck with her heart surgery, i'll be thinking of you x x x


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## My bump

Congratulations, she is a little cutie!!! I hope she continues to improve and remain well and good luck recovering from your section xx


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## willyandcourt

I just came across this thread...Kayla is such a beautiful baby. She looks like a baby princess. And she is PERFECT. She was fearfully and wonderfully made.


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## JaydensMommy1

I am unfamiliar with your situation, but I wanted to say how beautiful she is. My son had a full head of hair too, and I think it looks absolutely precious.
Stay a strong beautiful mommy, it takes a special mom to take on any type of challenge after birth or during pregnancy. I wish the best to you and your family.


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## sar35

she is beautiful, i wish you both the best x


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## FiNZ

Congratulations, and you are amazing and brave and strong, and you have a beautiful, pretty little darling girl. xxxx


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## jojo2605

Hiya hun. Your little girl is absolutely perfect! All that hair!! 

Just wanted to say that although my son doesnt have VACTERL, he has two elements of it (I believe it requires 3 to fit into this) 

He was born with Imperforate Anus and abnormalities to his right leg. 

If you need any advice or have any questions at all please contact me!!xxxx


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## lylasmummy

Awww, she is gorgeous. congrats xx


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## prdlyexpectng

congrats. wow, she is a little cutie pie


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## defobsess

She is beautiful!


Styling said:


> --------------------------------------------------------------------------------
> 
> On 4/06/2011 after they did a ammo testAfter that, they did a nst test to just cheak on baby Kayla and she failed it so they took her c-section. I waiting laying on the table and when they said here she comes all I could do was pray to hear her cry. She did and I am telling ya hearing your child dry for the 1st tme is something amazing.Since we knew already Kayla has VACTERL Syndrome. The nicu doctor was in the room ready to take Kayla the second she was born. They allowed daddy to see her for a min before taking her away.
> Recover is going pretty good. Now I ahve had 2 children naturl births and 1 c-section I can say the c-section is the worse. I could not even turn over in bed, or get up out of bed without hurting. Walking more then 10 mnins cause the tummy area to hurt something bad. Its does it better after a few days.
> 
> I got two see baby Kayla about 2 hours after she was born and she was perfect to me. Here are Kayla problems, She is still at the hosiptal 1 hour and 15 mins from my house and I go down to see her as much as possibles.
> She was able to breath on her own with very little help. On 4/8/2011 she had surgery for a colostomy. A colostomy is a surgically created intestinal opening on the abdominal wall. This allows Kayla to have normal bowel movements and relieves the bowel obstruction.The fliud on her brain at this time is not worth having a shunt be in yet, and possible she will not ever have to a shunt.She had to be put under the lights but as of today she was able to move back to a regular bed. They did a a heart EOG the day she was born and on 4/11/2011 and it shows some heart defects, they were waiting another week before doing another one, but today the doctors took her blood pressure in her arms and legs, and the arms were much higher, so he has order another EOG to be done in the morning. The easiest way to explain Kayla syndrome. ( Vacterl Syndrome) is to break it down by letter and explai ehat parts she has. , so Here it is.
> 
> Vacterl and what Kayla has.
> 
> V stands for vertebrae, which are the bones of the spinal column. (Kayla's spine is like cheakers, they are not line up like they should be)
> 
> A stands for imperforate anus (she has this and has had to have her colon brought up to the abdominal wall and a bag attached until she gets surgery to open up the anus wall.)
> 
> C is added to the acronym to denote cardiac anomalies. Heart defects. ( Kayla had PDA VSD and the aorta is small, PDA is a blood vessel that should close after birth on its own, but doesn't. VSD In the lower chamber of the heart there are valves that should iopen and close, one of hers does not close fully, allowing back flow. A small Aorta cause poor blood flow in the lower body, as well as other things, this can cause differents probelms)
> 
> TE stands for tracheoesophageal fistula. ( kayla so far doesn not have this, they are keeping a cheak on it incase she has a rare form.)
> 
> R stands for renal or kidney anomalies. ( kayla has only one kidney, the right one.)
> 
> L is often added to stand for limb anomalies. ( kayla has hips, feet, leg anomalies, as well as the extra toe)
> 
> Kayla is doing really good, and there will be struggles for her, but I know things could be much worse. She maybe not be perfect in other eyes so say, but she is so much more the perfect to us.
> https://i249.photobucket.com/albums/gg205/tabbycat_019/100_0249-1.jpg
> https://i249.photobucket.com/albums/gg205/tabbycat_019/100_0267.jpg


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## babybearsmama

Congratulations on your wonderful baby girl!


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## tummymummy

congratulations kayla is beautiful :hugs::hugs::hugs: xx


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## sweetcheeks78

What a pretty girl! Just beautiful, so glad she's doing well x


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## mtaylo07

She is so beautiful. God bless you all!


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## KKSARAH

Congratulations, she's beautiful xx


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## Mrsmitch80

Hi, what a beautiful little girl!

My daughter is two and was initially thought to have VACTERL but has now been diagnosed with lower mesodermal defects (same thing really) She had a club foot, dislocated hip, one kidney, imperforate anus and spinal defects including tethered spinal cord.

She's had 5 operations now and ponsetti treatment for her foot and is doing fantastically. I know the first few weeks seem awful but it does get so much better, these little ones are so special and brave.

If you ever want to talk just pm me, take care xx


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## baby jake

hi my son jacob was born 5/24/11 and also has vacterl we started seeing complications at 4 months pregnant we didnt know he had the syndrome till he was born.. all the defects he was diagnosed with was overwhelming and frightening when we heard. he has had 3 surgerys one was for his heart he had a vsd repair he also had a tef repair ( tracheoesophagial fistula) hes a nissen done due to the severe reflux he has one surgery to go but not until he starts getting older the surgery is for a teather spine he also has a horshoe kidney he has never been bottle fed he has a g tube he is now almost 5 months and starting to get introduced to the bottle im very nervous about him eating more solid food cuz i have read some scary stuff about the air ways calapsing due to the tef repair does anyone have any of these defects i wanting to find out more info from someone who has a child with a tef repair..


HERES THIS CHART I FOUND KINDA INTRESTING:
Table 1 Incidence of VACTERL defects by type
Vvertebral anomaly 24.1%
Tethered cord 4.4%
Butterfly vertebra 3.5%
Vertebtral fusion 4.4%
Hemivertebra 4.4%
Additional lumbar vertebra 1.8%
Additional or absent ribs 5.3%
Aall atresias 14.3%
Imperforate anus 10.7%
Duodenal atresia 3.6%
Cintrinsic heart lesion 32.1%
Ventricular septal defect (VSD) 22.3%
Atrial septal defect (ASD) 11.6%
ASD and VSD 16.1%
VSD only 7.1%
ASD only 4.5%
Tetralogy of Fallot 4.5%
Dextrocardia 3.6%
Coarctation 1.8%
Double arch 0.9%
TEatresia distal fistula 83.0%
H type 5.4%
Pure atresia 4.5%
Double fistulas 1.8%
Atresia/proximal fistula 0.9%
Distal fistula · 2 0.9%
Rinternal urinary anomaly 17.0%
Reflux 7.1%
Horshoe kidney 6.3%
Hypospadias 5.4%
Solitary kidney (agenesis) 3.6%
Ureteropelvic obstruction 2.7%
Cryptorchidism all 2.7%
Bilateral cryptorchidism 1.8%
Unilateral cryptorchidism 0.9%
Dysplastic kidney 0.9%
Lskeletal anomalies 8.9%
Absent radius 3.5%
Digital anomalies 6.2%
Hip dysplasia 0.8%
Otherall others 10.8%
Cleft palate 4.5%
Abnl chromosomes 3.6%
Trisomy 21 1.8%
Cleft lip 0.9%


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## midg08

Oh She is precious! My ds was born with Imperforate anus and a few other minor issues. If you ever need to just talk about it, I am hear for you! As anyone will tell you having a child with any sort of special needs can be challenging at times but it is worth it every day. :hugs:


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## R&JBabybean

congratulations she is beautiful x x


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## nineena

My Baby Ella who's now 16months was born with tracheoesophageal fistula/oesophageal atresia but she didn't have VACTERAl. 

How is your baby doing now? If you're on facebook theres a BRILLIANT support group for both TOFs and VACTERAL and there's a charity website full of info and a great community at www.tofs.org.uk.

All TOF bubbas are different, Ella for example was a relatively easy repair at 3days but she's required 6 stretches of her oesophagus since the initial repair. Ella was also rare in the fact that her fistula or join grew back and she needed to have another TOF repair when she was 10months old. Ella was predominently tube fed aged 10wks to 11months as she couldnt tolerate oral feeding, kept choking and was so small she couldnt drink the volumes needed for nutrition. She's come on leaps and bounds now though and last week had her gastrostomy removed and eats better portion sizes than toddlers her age without any problems. There are still 'problem' foods for Ella, things that are dry and stodgy like real mashed potato and pasta get stuck but if you add a sauce to them she's fine with them. She also has sever GORD but is yet to have the Nissens as her surgeon feels she would become tube dependant and rather than make a problem when there doesnt appear to be one she's just on lots of medication instead. Ella was 3lbs 4oz when she was born and at last weigh in at 15months was 18lbs, just between the 2nd and 9th centile. 

Her oesophageal dilations or stretches as theyre commonly called are now planned in advance instead of in an emergency. We know of some children who have NEVER ever needed a dilatation and have had no problems since the initial operation.

When Ella was born there was a lil girl born 2wks before her who was a TOF with Vacteral, she had heart problems,no bottom spine and an imperforate anus and kidney problems but after the TOF repair she had no further feeding issues and they were told she wouldnt have any problems with mobility as she could kick her arms and legs freely. She had her imperforate anus repaired when she was 6months old and as far as i know she's done really well since.

Hope ive managed to answer a few of your questions but feel free to msg me with anything else you want to know

Hugs and hope you and your LO are doing well


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## Medzi

Tears are in my eyes - she is perfect :)


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