21 weeks pregnant found out one baby girl may have open spinal bifida

[TapMa]

Hello,

My name is Tina, in Chicago. My husband and I are expecting twin girls and just found out that there's a great possibility of baby b having osb. This situation is most freighting because we have a 15 month old, and an almost 9 yr old. At the visit with the doctor she stated that a more detailed ultrasound was needed and we could go on from there. I have been looking through the internet and the info that I am getting is very overwhelming! I spoke with my sister who went to school for medical encoding, and she made me feel even more upset about the situation. Talks of aborting one baby and not the other. I have a had a termination in my past, it isn't a good thing for my soul. At the same time, we just don't have the resources of taking care of a little one with disabilities, on top of having a 15 month old & 9 year old. We just don't have everything we need financially to take on such big responsibilities. I hope that I didn't offend anyone, I just feel STUCK! If anyone has some words for me, please respond. Thanks So Much, for listening.

Tina

[Barb]

Hi Tina,

Most people with SB receive some sort of financial help through medicaid, especially if you are barely making ends meet as it is. The baby will most likely qualify for many types of programs. Here in CO the medicaid program even reimburses moms to stay home and care for the child. I would not base a decision on financial factors. There is a lot of financial help out there

Barb

[LisaJoy]

Tina,

Congratulations on your twins -- yes, even the one that might have sb. After all, she's a baby first, not just a medical diagnosis.

Take some time to read through the threads, especially under "recently diagnosed." There's a long one that was started by janjanwhit that would be a good place to start.

Medical personnel are outrageously, and unwarrantedly, pessimistic about sb. Many people live very well with the condition -- including a number of adults who participate in this forum. Be aware that medical folks will always give you a "worst case scenario," and usually things turn out much better than that.

You ABSOLUTELY must have a consultation with a pediatric neurosurgeon who specializes in treating kids with sb BEFORE you make a decision. Maternal/fetal medicine specialists as well as OB/GYNs know NOTHING about treating kids with sb and about the long-term prognosis for the condition. You are very fortunate to be in Chicago, because one of the premier sb programs in the US is at Children's Memorial Hospital. PLEASE make an appointment to talk to people there after you have your diagnosis confirmed.

Lisa

[LisaJoy]

PS Barb is right -- money should not figure into this decision. There are state & federally funded programs that help meet the needs of kids with disabilities. A medical social worker at Children's Memorial can help you navigate the system.

[valmarie]

You know what, now is a time to just trust that things beyond your control will fall into place. I have a 2 y/o (turned 2 in Jan) and a 5 y/o in a private preschool and my son was boen w/SB in Feb. It can be overwhelming but each case is so different there is no way to live but one day at a time. We dont have much extra and were told of all the expenses and while we do have some bills they really arent much more than what the avg american family has in debt anyways. The first month was the hardest but my son has done great and is down to just follw up appts now so its not a big deal. Set your heart to make it and you will - one day at a time. Being prepared is great to a point but sometimes you gotta leave the extra info alone and move in blind faith!!! Too much info can be a bad thing!

[valmarie]

tina,

congratulations on your twins -- yes, even the one that might have sb. After all, she's a baby first, not just a medical diagnosis.

Take some time to read through the threads, especially under "recently diagnosed." there's a long one that was started by janjanwhit that would be a good place to start.

Medical personnel are outrageously, and unwarrantedly, pessimistic about sb. Many people live very well with the condition -- including a number of adults who participate in this forum. Be aware that medical folks will always give you a "worst case scenario," and usually things turn out much better than that.

You absolutely must have a consultation with a pediatric neurosurgeon who specializes in treating kids with sb before you make a decision. Maternal/fetal medicine specialists as well as ob/gyns know nothing about treating kids with sb and about the long-term prognosis for the condition. You are very fortunate to be in chicago, because one of the premier sb programs in the us is at children's memorial hospital. Please make an appointment to talk to people there after you have your diagnosis confirmed.

Lisa


i totally second this! Esp about doctors being pessimistic about it. At 3 months my son is such a joy to me and its so different than what i was lead to believe. Babies are such blessings!!!

[janjanwhit]

I third the bit about pessimism. They acted as though my baby was not worth the extra attention he would need. He is also three months old and doing great! Only had the one op. Shocked all his doctors!

[cadon's mum]

cadon is 3 months old now too and is such a beautiful baby. Pregnancy and the first month was a nightmare but now things have settled, cadon is just like any other baby he just needs little extra attention.

[kellymumof4]

hi, i had the same situation as you.I have identical twin girls they are 9 months old now.Ruby was born with spina bifida,hydro,chiari,clubfoot,incontinence.
I was told it was best to terminate by my hospital but after much soul searching i decided i would just take each day as it comes and what will be will be!!
I,m a single mum i also have abbie 12 and grace who was born with spina bifida occulta shes 3 and then casey my other twin.
I find it so hard emotianaly and its physically exhausting but ruby has the biggest smile no matter wat shes been through and thats what keeps me going.
My advice to you is be strong and talk it through with the medics before making any decisions.

[mum]

I hope your next appointment goes well for you, i wouldn't trawl through internet search engines too much as sometimes the information can be really overwhelming and certainly very scary when you don't have a clear picture of what you are looking for...

None of my daughters have cost us any extra financially apart from maybe incontinence products (but i learnt to be excellent at begging from various health care providers :D ) afo's, mobility aids ect ect were all provided..

Time wise they haven't needed much in the way of extra care apart from extra extra confidence early on and as a result are both fiercely independant girls.. I have never found it emotionally draining looking after them you do the extras without thinking, the biggest hurdle i ever had was the medical professions and getting what they needed (but i also got excellent at being a pain in the butt) :D

Let us know how you get on with your next appointment i wish you well x