12+5 days scan abnormalities

emmaalycem89 · April 2015

hello everyone,

Me and my partner were completely shattered yesterday when we had a meeting with out doctor who broke the news to us that
a) the sonographer was unable to locate a right leg and
b) they believe our little baby has gastroschisis, severity unknown as yet.
I'm just wondering if anyone else has had something similar show up in their scans? We are absolutely devastated. Obviously, gastro is fixable outside the womb but can take 6 weeks to recover. The thought of not being able to take my babe home after 2-5 days and cuddle them whenever I want sounds completely horrible and heartbreaking but if it can be fixed I would only want the best for my child. But a missing leg? Bear in mind this is 'our' opinion so please don't jump down my throat, but a missing limb is not quality of life to me and my partner as we are both active people who enjoy getting out as much as possible. We have an ultrasound with a specialist at 2 today but we are both riddles with anxiety and sadness as we have no idea what to expect. For something that is supposed to bring so much joy into a couple lives, pregnancy has been an emotional roller coaster for us so far and not being able to share our exciting news with our extended family has been such a letdown as we don't know where we sit at the moment.
Would love to hear from some mums that are or have been in a similar situation to Steve and myself.

angela_angel · April 2015

I'm so sorry to hear this. My thoughts are with you and I'll be praying for your little one. ❤️

gatorgrad2007 · April 2015

I do not have a similar experience, but just wanted to say my thoughts and prayers are with you all. As a FTM I can say that pregnancy has brought on so much anxiety for me. I can't imagine what you're going through. A missing limb doesnt necessarily mean poor quality of life. I have a friend that is an amputee since age 8 and she has lived a very full life. She lost her leg due to a mystery illness and has been in and out of hospitals every since, but she has such a positive can do attitude. She loves to Zumba and is always at the front of the class. Prayers to you and your family.

ashhay87 · April 2015

I am so so sorry that you are going through this.

Please know that there are people who will support your decision, whatever that decision may be. No judgement from me at all. No one else is walking your journey, no one else can tell you what to or not to do.

I will be praying for you, your partner and your extended families. Please update us, I will be thinking of you xox

Snoeebunniee · April 2015

I know I might get some rude feedback on this message but I tried to ignore the feeling I had when I read this post and I just can't get it out of my head. Please Please Please keep him and just adore him. He can live a completely full life, having a disability is what you make of it. I know you will do what you feel is right, but I just had to tell you this for some reason. Good luck and I'll pray for you and your family ♡.

amberterry87 · April 2015

Praying for you and your partner. I can't imagine what it would feel like to hear this news. Hopefully your testing will show only good things at your next scan xx

furelise93 · April 2015

A missing limb most definitely doesn't mean poor quality of life. My youngest brother was born without a limb, and he is living a very full life. It is amazing what doctors can do with prosthetics. He has been an inspiration to so many people in the small community that we grew up in. He hasn't missed out on anything because of him missing a limb, so please don't think that your child would have a poor quality of life, because it certainly doesn't have to be the case! Prayers for you and your partner.

lanaloulittle · April 2015

I hope you can make a decision that brings peace to you and your husband's hearts.

That being said, a missing limb does not automatically mean a poor quality of life. No disability does. When I child is born that way, they learn from birth how to be as they are. They know no different then the fact that they only have one leg and that is life for them. Prosthetics have come soooooo far since they were first used. I would do your research before making any final decision.

I am so sorry you are dealing with this and wish you nothing but acceptance in the decision you make. It is truly something very personal, but I do urge you to maybe talk to people missing limbs or read up on the subject.

danniellemichelle · April 2015

Praying for you and that the peace of God will surpass all your understanding ❤️❤️

Cupcakesandquilts · April 2015

See, I guess I'm of the mindset that a missing limb is a pretty serious birth defect. It would make me question what else isn't quite right. I'd be right there with you, OP, faced with trying to make the best decision for my family as a whole. I'm really sorry you're in this position. Hoping the further testing you're having done will bring things into focus...

nmatheny14 · April 2015

Sorry to hear your news! All I know about missing limbs is that my best friend had her right leg amputated following an accident right after we graduated from high school and has a prosthetic. She isn't limited much at all. Goes to amusement parks, drives, swims, parasails, was in my wedding. And, I imagine that if born without a limb, adaptation would just come naturally. Good luck with your future appointments.

twogirlsandagreen · April 2015

Oh I am so so so sorry you are going through this. While a missing limb does not scream poor quality of life necessarily, the fact that there are two abnormalities would make me seriously wonder what other issues there could be that have not been found yet. We would also be seriously considering all of out options, as gut wrenching as that is to even think about. I will be praying for you guys and hope that whatever you decide brings you some level of peace. Hugs mama.

aah1013 · April 2015

I am so sorry that you received this news. I will keep you all in my prayers.

As the wife of an amputee (left leg, above the knee), I will let you know that my husband most certainly has a good quality of life! I mean, he works 40+ hours a week, comes home and watches our daughter while I work, all while getting his masters. He's an amputee, not an invalid. We still go to the beach, go on walks, and enjoy pretty much everything that everyone else does. I feel like a child born that way will adapt even better than someone who loses their limb later in life. When we were faced with amputation, it was so upsetting. The doctor told us to YouTube young amputees and see if we felt those people had a better quality of life than what we were experiencing. There was no question that we needed to amputate. It was the best decision we could have made. Prosthetics have come so far! They even have something called the power leg which has a motorized knee that can propel the person up the steps (foot over foot instead of one step at a time with the "good leg"). Technology can give people a very normal life.

I can't imagine the shock and upset that you must be feeling. But, I hope that you are able to adjust to the idea and know in your heart that it will be ok.

VioletandRose · April 2015

I am so very sorry you are going through this. I've learned through this process that pregnancy is one of the most anxiety-producing things we will ever experience.

Also, whatever happens, I would get a second opinion. A quick search of this on the Internet and it seems that it is quite early (maybe too early) in pregnancy to determine limb abnormalities. Just a thought.

XOXO

mandy903 · April 2015

My friends baby was just born with a cleft lip cleft palate and a little nub for his right arm. He has to have surgery for his little mouth but his arm is what it is. He is a beautiful happy baby! The found out via ultrasound during pregnancy also. They loved and accepted their little boy from the beginning just as he is.

MrsL32 · April 2015

I'm sorry you had to get all of this overwhelming news. When you first find out about your pregnancy it's certainly not what you expect. My thoughts are with you as you process this news and determine course of action.

curfam4 · April 2015

I'm not going through the same thing, but might be able to shed some light on this. While it's not a missing leg, my Mom was born with only one arm. Her left arm ends at her elbow, and honestly, she can do anything! She has raised 8 babies, had jobs, drives, cooks, bakes, literally everything! Her missing a limb does not, and has not hindered her life in any way. She did have a prosthetic when she was a child, and then got another when she was an adult, but rarely wore them as she felt it just got in the way, and she was quicker and able to do things better without it. She has never known anything different, so she just learned from infancy how to do things in her own way. Your little one would be the same way

MerVer · April 2015

I hope you guys can find some peace. Missing a limb doesn't stop a person from everything you have ever felt or thought in your life. They still have hearts and brains and love and ideas. I have a friend who lost his leg working as a police officer and he dances with his daughter and does everything we do. I'm sorry you had to find this out but I hope you see that he can be a normal human being.

numbr2 · April 2015

I was told at my nuchal scan at 13 weeks that when they are as small
As they are at that gestational age there is not a whole lot they can see well on their anatomy.... Maybe they are wrong since it is so early.

WilliamsGirl11 · April 2015

A friend in high school had small arms, maybe 5 inches long or so each. He grew up in my neighborhood and still taught himself to throw a baseball and play in our neighborhood games. He learned to write with his arms and was an excellent student. He got his license along with the rest of us at 16. He learned his limits and what he could do and he was better with his smaller arms than most people with regular length arms in all kinds of activities. I have not experienced this personally but I can see that it would be a huge shock. If I was in your position I would get as much information from the specialist as possible and prepare yourselves the best you can. Talk to prosthetic makers and see what they offer. Maybe find a support group that have similar obstacles like you guys are facing. Do your research and truly understand all you can for when your little one is here you have confidence in your decisions and have a game plan. You and your partner are a team in this and this is your perfect little baby, limb or no limb.

gerbies · April 2015

I am so sorry you received this troubling news. I am so glad you are seeing another doctor to evaluate the situation. I promise I won't be another one of those posters who share a story of someone they know who lost a limb (not the same as what you're dealing with) or someone born with that type of deformity. I agree that these two issues they found could be indicative of more concerns to be discovered later. If this were me and the diagnosis were confirmed by several doctors, my husband and I would have to consider the gut-wrenching decision to terminate. I would not want to knowingly bring a child into the world with those issues. Maybe you don't want to be the parent of a child who is an inspiration? You have the power of choice, which is a gift.

bishopgn · April 2015

As a physical therapist, I ask you to research the missing leg part of your baby's diagnosis. Prosthetic limbs have come a long way and would allow for a fully active child. Not to mention wheelchair sports and Olympics.

twogirlsandagreen · April 2015

Just playing devil's advocate, but wouldn't you wonder what went so wrong in early development (assuming, of course, that the diagnosis is correct) that an entire leg didn't form and also that baby's intestines are outside of his/her belly? I think OP has reason to be concerned. Losing a limb after birth and being born with a partial limb is quite different than missing one entirely.

Ameila causes (Wikipedia)

The complete absence of an arm or leg in amelia occurs as a result of the limb formation process being either prevented or interrupted very early in the developing embryo: between 24 and 36 days following fertilization.[1] Tetra-amelia syndrome appears to have an autosomal recessive pattern of inheritance - that is, the parents of an individual with tetra-amelia syndrome each carry one copy of the mutated gene, but do not show signs and symptoms of the condition.[2] In a few cases, amelia may be attributed to health complications during the early stages of pregnancy, including infection, failed abortion or complications associated with removal of an IUD after pregnancy, or use of Thalidomide.[3

To me, the stories about people living normal lives with partial limbs or amputated limbs is fairly different. Let's just support her while she and her husband face this nightmare. If their doctor tells them that their baby will have no other health concerns, and they keep the baby, let's share all of the happy stories we can like you have done. But until then, let's just send them love and support while they make a decision instead of the stories that adds guilt she does not need right now. If her dr informs them that the baby will have other issues due to developmental problems and they decide to terminate, they are doing what is best for that baby and their family. Let's support her either way. No more guilt trips ladies. Put yourselves in their shoes. This is much more than simply a missing limb.

CanadianBrideToBe · April 2015

Best response...

ashhay87 · April 2015

twogirlsandagreen said:
Just playing devil's advocate, but wouldn't you wonder what went so wrong in early development (assuming, of course, that the diagnosis is correct) that an entire leg didn't form and also that baby's intestines are outside of his/her belly? I think OP has reason to be concerned. Losing a limb after birth and being born with a partial limb is quite different than missing one entirely.

Ameila causes (Wikipedia)

The complete absence of an arm or leg in amelia occurs as a result of the limb formation process being either prevented or interrupted very early in the developing embryo: between 24 and 36 days following fertilization.[1] Tetra-amelia syndrome appears to have an autosomal recessive pattern of inheritance - that is, the parents of an individual with tetra-amelia syndrome each carry one copy of the mutated gene, but do not show signs and symptoms of the condition.[2] In a few cases, amelia may be attributed to health complications during the early stages of pregnancy, including infection, failed abortion or complications associated with removal of an IUD after pregnancy, or use of Thalidomide.[3

To me, the stories about people living normal lives with partial limbs or amputated limbs is fairly different. Let's just support her while she and her husband face this nightmare. If their doctor tells them that their baby will have no other health concerns, and they keep the baby, let's share all of the happy stories we can like you have done. But until then, let's just send them love and support while they make a decision instead of the stories that adds guilt she does not need right now. If her dr informs them that the baby will have other issues due to developmental problems and they decide to terminate, they are doing what is best for that baby and their family. Let's support her either way. No more guilt trips ladies. Put yourselves in their shoes. This is much more than simply a missing limb.

I have to agree with you @twogirlsandagreen! Well said.

Without sounding harsh to some women here, people need to remember we aren't all living in the same shoes, we don't all know the individual circumstances of each other's lives, we aren't all privy to the financial social or familial situation that each is enduring. Perhaps instead of breaking down women who are facing these challenges with personal opinions, we need to be building these women up with support and love - that is, unconditional love.

It takes a stronger woman to ask for help, than it does for a woman to criticise, condemn or shame another based on personal beliefs and uneducated opinions.

OP, you have support here. Support, love and unending prayer and care. You are a beautiful, capable and Strong woman. You are loved. And most importantly, you are no alone - you have an entire village of women here who will support you no matter what your choice may be xo

linziecro · April 2015

my daughter was born with gastroschisis, and it is much more complicated than a surgery and a 6 week recovery time. That is by far the best case senario. My daughter was in and out of the hospital for almost first year of her life having to have multiple surgeries and multiple bowel resections. Much if this year she had an iliostomy bag and fought off skin lesions and infections because of it. Gastroschisis is a much more serious medical condition than missing a limb which will have medical effect on your child only a physical effect. there is likely no connection between the two defects as gastroschisis very very rarely presents with other defects, my daughter was also born with an unrelated hole in her heart and acute arithmia. I am not saying this to scare you or make it worse, I say it because today my daughter is a beautiful 16 year old young lady who has never been anything other than a blessing. Yes she has scars, yes she has no real belly button and will probably never wear a bikini but that's is just a part of who she is and she is nothing short of perfect. Yes the road will be hard and probably long but it would be well worth it.

sbeltre · April 2015

It's your life your decision. No one can do it for you!

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