mitrofanoff stoma and pregnancy

[jessie.gray]

Has anyone on here been pregnant and had a mitrofanoff stoma?

I am going back to college right now (getting a degree in medical billing/coding), and once I graduate next year, I am planning on going through a sperm donor and becoming a "single mother by choice". The only problem is that I can't find any information on pregnancy and having a mitrofanoff.

As you get bigger, does this make it to where you can't use that stoma? Also, is there a risk of the stoma being damaged or torn if I were to need a C-Section? I asked my primary doctor this, but she didn't know the answer, so I thought I'd ask some of you who have had experience with this.

Jessie
(spastic paraparesis and L-4 SCI)

[LaMemChose]

If I understand it correctly, your paralysis can be hereditary, often is. Are you seriously looking to have a baby knowing the odds are decent you can pass it on to a child who will become paralyzed?

I'm not answering your original question, but I am asking given your previous posts. You would seriously have a child who may have pain, difficulty eating, swallowing, a child who may need a tube to be fed, would have trouble urinating, defecating, etc. and you know this in advance?

We are not lesser than, but to have a child knowing a paralyzing condition is hereditary?

Am I missing something here?

You had written paragraph after paragraph and post after post about non-existing children who supposedly were real and had your same dis and "did not mind" using adaptive equipment because they were "just like Mommy"?

I don't know if you are serious about having a baby or not, but I really hope you are not.

[LaMemChose]

Has anyone on here been pregnant and had a mitrofanoff stoma?

I am going back to college right now (getting a degree in medical billing/coding), and once I graduate next year, I am planning on going through a sperm donor and becoming a "single mother by choice". The only problem is that I can't find any information on pregnancy and having a mitrofanoff.

As you get bigger, does this make it to where you can't use that stoma? Also, is there a risk of the stoma being damaged or torn if I were to need a C-Section? I asked my primary doctor this, but she didn't know the answer, so I thought I'd ask some of you who have had experience with this.

Jessie
(spastic paraparesis and L-4 SCI)

BTW, assuming you still have gastroparesis and are still on a feeding tube, isn't proper nutrition substantive to nurture a healthy baby going to be an enormous difficulty?

[betheny]

Not sure biological motherhood is a good choice for you, jessie. I'm just gonna quote YOU, a couple of years ago...I don't understand why you are even speculating on the 50-50 chance of giving a progressive disease to a child-particularly since you have a progressive disease yourself, and will progress downward even faster than the rest of us.

I post all this not to be mean, but b/c I want to remind you that some of us here at CC have been here a while. I don't think it would be fair of me to pretend not to know your, um, parenting background on the internet.

If you must parent, I suggest adoption. I also suggest pondering that long and hard. Single mothering is hard. Single mothering when the mom is disabled is just that much more difficult. Sentencing a child to a mother that is going to become progressively more ill? I don't think it is fair to do that knowingly, not without long serious consideration of the situation.

"...The lady who changes the dressing on my PICC Line said the same thing in terms of having kids with HSP. She even asked me if my brother and sister had ever got tested and I said no, because they never showed any signs of the defect. She told me that if I do decide to have kids in the future, I should definetly get genetic testing done and all sorts of stuff like that to make sure the child won't have HSP. All I know is that no one should ever have to deal with having HSP, 'cause it sucks royaly..."


/forum/showpost.php?p=893112&postcount=49

[Kav]

Not sure biological motherhood is a good choice for you, jessie. I'm just gonna quote YOU, a couple of years ago...I don't understand why you are even speculating on the 50-50 chance of giving a progressive disease to a child-particularly since you have a progressive disease yourself, and will progress downward even faster than the rest of us.

I post all this not to be mean, but b/c I want to remind you that some of us here at CC have been here a while. I don't think it would be fair of me to pretend not to know your, um, parenting background on the internet.

If you must parent, I suggest adoption. I also suggest pondering that long and hard. Single mothering is hard. Single mothering when the mom is disabled is just that much more difficult. Sentencing a child to a mother that is going to become progressively more ill? I don't think it is fair to do that knowingly, not without long serious consideration of the situation.

"...The lady who changes the dressing on my PICC Line said the same thing in terms of having kids with HSP. She even asked me if my brother and sister had ever got tested and I said no, because they never showed any signs of the defect. She told me that if I do decide to have kids in the future, I should definetly get genetic testing done and all sorts of stuff like that to make sure the child won't have HSP. All I know is that no one should ever have to deal with having HSP, 'cause it sucks royaly..."


https://www.carecure.net/forum/showp...2&postcount=49

Wow… That was a sadly enlightening thread. After reading through all the deception in it from you (Jessie) in that thread I have to question your motives.

[SCI-Nurse]

While I may believe that what Jessie is contemplating is not the right thing for her, (and I said may believe that), I do believe that she has the right to change her mind and also to at least explore this issue. I would agree with Betheny that single parenting is something that I (as a parent) can not even imagine doing. It is a commitment that is HUGE and takes a very special person to be able to handle it. That is not to say that she can't handle it - just that she needs to think long and hard about it.

Jessie- I would strongly encourage you to explore this very thoroughly. Utilize services like Through the Looking Glass (U of Ca @ Berkley) and to think through the part of becoming pregnant by choice. I would definitely also encourage you to go through genetic testing prior to doing this- at least this will give you more information on which to base your decision. Lastly, speak with the physician who did your Mitranoff and see what resources they may have.

CKF

[crypticgimp]

i have a plan to be a single mom by choice. but i would either adopt/surrogate mom. but it is a 20yr plan lol. i'm 4 yrs in. getting my higher education will get my phd. then once i work i will save money for 10yrs. this will ensure i have a house, live in an area that is good for school, will have money for emergencies etc. i have an awesome support system of friends and family so really it'd be a village helping to raise a child if i were to go through with it. until then i volunteer my time withchildren, watch my friends' kids and make sure that is what i want

sperm banks arent a grocery store that u can just walk into and bam there u go. they will do extensive testing on you. and if u have a progressive disease a reputable place prolly won't be willing to help in that case. plus i think u really arent planning very well. how do u know u will get a job right after graduation? how will u pay for invitro fertilization? someone right out of school isn't going to be able to afford those things. do u own ur own home or rent? how is the state of ur disease right now? pregnancy is harsh on a "normal" ab person, let alone someone with a harsh disease as i have read urs to be.

[LaMemChose]

While I may believe that what Jessie is contemplating is not the right thing for her, (and I said may believe that), I do believe that she has the right to change her mind and also to at least explore this issue. I would agree with Betheny that single parenting is something that I (as a parent) can not even imagine doing. It is a commitment that is HUGE and takes a very special person to be able to handle it. That is not to say that she can't handle it - just that she needs to think long and hard about it.

Jessie- I would strongly encourage you to explore this very thoroughly. Utilize services like Through the Looking Glass (U of Ca @ Berkley) and to think through the part of becoming pregnant by choice. I would definitely also encourage you to go through genetic testing prior to doing this- at least this will give you more information on which to base your decision. Lastly, speak with the physician who did your Mitranoff and see what resources they may have.

CKF

CKF, if this only impacted her, no biggie. I'm huge on self-determination, but not at the cost to another. Jessie could do something which is so very, horribly selfish.

Jessie has said it sucks to have HSP. I have no doubt it does. Paralysis sucks. Period. To knowingly, deliberately have a child with at least a 50/50 shot of passing on a progressive, painful, paralyzing condition? Unconscionable.

HSP is progressive, chronic and impacts all areas of Jessie's life. Feeding tube anyone? Repeated nursing home stays post repeated ops? Jessie has said she got HSP from both parents so she does not have a regressive form. That means she has a 50/50 chance of having a child with it and that is if the sperm used is not a chromosomal carrier for HSP.

Who makes such a selfish decision? Apparently Jessie is willing to do so.

Jessie, you are all over the net writing reviews of books on mothering, lactation, reviews of products from breast pumps to nursing pads and more. You have a visible to the public wishlist of books which reads as creepy given your past. It seems nothing much has changed except now you say you want to buy some sperm to have a child who may well have a life altering, painful, progressively paralyzing dis.

When you spun your previous fantasies of the children who were not yours, you often wrote of two little girls who were glad to be just like Mommy. Just like Mommy with HSP. In the real world, a child is not going to be glad to be just like you, especially once other kids begin to torment that dis child. You will not be thanked for physical pain. There will be no Mother daughter pain parties with pajamas, popcorn, painkillers and good times.

A child will not come home from school bragging about a pee accident where the other kids made fun of urine soaked clothes because, "Hey, I don't care. I'm just like Mommy!"

If you think these things, and you well may given your previous fantasies, you are wrong. It won't happen. You may be stunned when that little person is needy and angry and in pain, when that little person struggles with a body which doesn't do what he/she needs and wants for it to do.

Just wait until he or she realizes you chose to have him or her and you knew you were quite likely going to cause a lifetime of paralysis for him/her. Think that will make for stellar relations with your teen? I'd say, "Good luck!" but, you're going to need more than that.

I'm being quite blunt. What you consider a choice is not about you. What you want to choose is to cause a child to have, at minimum, a 50/50 shot of paralysis. Were you to paralyze a child intentionally post partum, you'd rightfully go to jail.

SCI Nurse suggested Looking Glass and genetics counseling. I'm going a step more. I'd like to suggest mental health counseling for you.

Please tell a good, licensed therapist about your desire for children, about your disability, about your history, both real and fictional. If you are unable to say some of it aloud to your therapist, just print it out and take it along. Also, print out the reviews of books and products you've given and your parenting item wishlist.

Don't pass along your painful, paralyzing condition to a child who has no say in the choice to live with paralysis. I've no idea if your parents knew they carried the chromosomal abnormalities or not. If they did and this happened to you, it is unnecessary to repeat it.

You said HSP sucks. Let that suckage stop with you.

[dash]

Thank you LaMemChose, Jesse seems to be reminded again and again. Her comments scare me. They are like women who go to any lengths for a child, including kidnapping. Get some mental health care.

[crypticgimp]

dash, i agree. it really makes me ill. especially knowing my plan and how hard i am working in the hopes of achieving that goal. i read that thread and it was just so eery how she kept repeating "oh just like mommy!"

[SCI-Nurse]

I don't necessarily disagree with anything any of you have said. I am just trying to push Jessie into thinking about the issues, but I guess I am not as blunt as you all are. (Not being nasty about that.) You all have a different relationship with her and a much longer one than I do.

I think that all of the things that have (and my guess is, will continue to be) said need to be said. I do feel that it is more powerful coming from you all.

And whether or not we agree with her decision, fortunately or unfortunately, it is her decision.

Reputable genetics counsellors and alternative fertilization programs (I am not sure if that is a phrase or not) will look at all of the issues.

CKF

[jessie.gray]

Thanks for nothing! I'll say this again:

SINCE I TOLD ALL OF YOU THAT I DON'T HAVE A CHILD, I HAVE NOT POSTED ANYTHING ABOUT A FAKE CHILD SINCE. EVEN MY FACEBOOK PAGE IS 100% TRUE AND THE PICTURE OF THE BABY ON THERE, PLAYING AT MY HOUSE, IS MY 1 YEAR OLD NEICE, BRIANNA. I HAVE GIVEN MYSELF TO THE LORD AND ALLOWED THE HOLY SPIRIT TO COME INTO MY LIFE, BEEN FORGIVEN BY GOD, AND HAVE NOT DONE ANYTHING THAT HORRIBLE SINCE THEN! I DON'T LIE ANYMORE AND I HAVE FIRENDS AND FAMILY THAT WOULD BE HAPPY TO AGREE WITH THAT NOW. ALL OF THE POSTS YOU READ ON REVIEWS ARE OLD POSTS (if you'd happen to look at the dates on them). THE ONLY POST I WROTE RECENTLY WAS ON A BREAST PUMP I HAD TO USE TO RELIEVE ENGORGEMENT DUE TO BEING ON DOMPERIDONE FOR GASTROPARESIS (a drug that very commonly causes lactation by increasing prolactin levels) AND HAVING BREASTMILK PRODUCTION. LOOK THIS MEDICINE UP AND YOU'LL DISCOVER THIS. ALL MY WISH LISTS ON AMAZON.COM FOR BABY BOOKS AND NAURAL HEALTH BOOKS ARE FOR A NATURAL HEALTH SHOP MY FIRENDS AND I PLAN ON OPENING IN A YEAR. THEY ARE JUST LISTS OF POSSIBLE BOOKS WE WANT TO OFFER.
I HAVE HAD COUNCELING SINCE LYING ABOUT HAVING A CHILD AND ALSO HAD GENETIC TESTING DONE. THE GENETIC TESTING RESULTS SHOWED THAT I HAVE A SLIM CHANCE OF PASSING SPASTIC PARAPARESIS DOWN TO A FUTURE CHILD, SINCE NO ONE ELSE IN MY FAMILY HAS IT EXCEPT ME! BECAUSE NO ONE ELSE IN MY FAMILY (imediate or long range) HAS SPASTIC PARAPARESIS, THE DOCTORS EVEN TOOK THE "HEREDITARY" PART OFF THE DIAGNOSIS IN MY CHARTS LAST OCTOBER.
I HAVE ALSO SEEN ALL OF MY DOCTORS AND ALL OF THEM SAID THAT THERE SHOULD BE NO REASON WHY I CAN'T HAVE A CHILD SAFELY. MANY WOMEN WHO HAVE OSTOMIES HAVE HAD CHILDREN NO PROBLEM, I DON'T HAVE KIDNEY REFLUX ANYMORE, I DON'T HAVE TO TAKE LONG-TERM ANTIBIOTICS ANYMORE, I AM OFF OF 7 OF THE MEDICINE I USED TO TAKE (now I only take 4 and one is as needed), I AM ABLE TO WALK NOW WITH A ROLLING WALKER INDOORS, I HAVE LOST WEIGHT, I ONLY USE THE FEEDING TUBE NOW TO MEDICINES (not formula), AND MY NEUROLOGIDST TOLD ME THAT THE "DYSREFLEXIA" SYMPTOMS I WAS FEELING WERE NOT THAT AT ALL. IT TURNS OUT THEY WERE JUST NERVE/MUSCLE REACTIONS TO AN OVERLY-FULL BLADDER (this is when I'd get those symptoms most often). HE TOLD ME TO EMPTY MY BLADDER MORE OFTEN AND IT HAS COMPLETELY ELIMATED THESE SYMPTOMS.

I SERIOUSLY WISH ALL OF YOU ON THIS SITE WOULD FORGET THE PAST!

All I asked were some simple questions that I couldn't find answers for online. The least you all could have done is answered them nicely.

Jessie

[crypticgimp]

maybe the mobilewomen site would have more info regarding this kind of stuff.

[betheny]

People don't forget a past as bizarre as yours. You seem to think you told a little white lie. Not. You created an entire fictional world with precious little girls that exclaim "I pee just like Mommy!" That part is your affair. The part where you chose to suck us all into it is where it became our problem. Since you had spread your little internal movie over the whole internet, a stranger came to tell us you were bogus. I wonder what you did to put her on the alert?

I wouldn't feel right sitting silently by, knowing you plan to pass on a hereditary disease that paralyzes people. I'd feel less right if nobody made it clear that you aren't right in the head. You really need help. You don't need children, you need help!

Again, this is b/c you involved us in your mess. I was made privy to your fantasies of small children that pee just like Mommy, and your delight in that scenario. That. Ain't. Normal. Your fictional daughter loves her AFO too, also just like Mommy. In Normal World, a mother's heart breaks when her child is condemned to catheters and AFO's. You made quite a point of raving about a particular breast pump. I'm sure it is wonderful. You also made a point of informing us that your eldest was still nursing at 2 1/2. That's wonderful too.

But the reason you shared that is that your fictional youngest was facing mitrofanoff surgery. Just like Mommy. Share the pain.

It is some sort of Munchausen by proxy by internet by imagination. I doubt the condition has a name, actually, it is that weird.

I'm not judging you until you start passing the pain to real children. I'd like to see a lot more counseling, genetic and otherwise. I'm not sure I believe the hereditary part of your disease conveniently disappeared-that's between you and your doctors.

Your daughters might be boys. They won't always be 2 1/2. They won't always be delighted to pee and walk like Mommy. The day will come they will hate you for involving them, real humans, in your breast-feeding and cloth diapering fantasy. Have you addressed any of these issues? Because your fictional world is so carved in stone, I'm scared what might happen if you meet some actual reality. There is nothing more real than parenting.

And the fact that you hope to do it alone is even more frightening. I fear you aren't dealing w/ the practicalities of real life at all, when I hear such a plan.

[november]

Emi went through 2 pregnancies with a mitro I believe. The uro that did my surgery said to avoid a C section if I could but if I needed one he wanted to be there for it. Luckily I'm satisfied with just buying plants/flowers and dreaming of puppy dogs.