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My daughter was born at 36 weeks. She has meylo and hydro.

She is a hoot and beautiful! When my wife and I found out around 22 weeks of our daughter’s condition it was a lot like all the other stories I have seen. They told us to abort without a second opinion.

However, with mixed emotions, we had our beauty and we knew we made the best decision! The past three years we have had our ups and downs but we have a lot of good times too!

I wouldn’t change it for the world! My daughter teaches us as much as we teach her!

This story is like so many others I hear. People are encouraged everyday (still) to abort their children because they have Spina Bifida and that just breaks my heart.

Look at this little cutie! What a blessing!

Hi, my name is Isabella and I was born with spina bifida occulta with tethered spine syndrome, which meant that my spinal cord was attached to a fat lump instead of being loose inside my spine. At 3 months old I underwent dangerous, corrective surgery. It changed my life! But my problems were not over…
My condition was progressive and after a few years, I started having problems with my bladder muscles. I needed to carry supplies such as wipes, catheters, spare underwear, and liners. It didn’t take long before school friends started noticing.
But what could I do to make carrying these necessary supplies more discreet? There was nothing on the market to meet my needs so my Mom, Teresa helped me and we decided to find a solution. After testing several prototypes, I had an idea!
My Private Pocket Underwear was my tried and tested solution to carrying emergency supplies and back up underwear in a way that the other kids wouldn’t know, allowing me to enjoy life like other children.
My family has made it their mission to make life better for many children with medical needs and incontinence problems.
My Private Pocket is a range of underwear products designed especially for kids with incontinence problems so that they can be prepared for those little emergencies without embarrassment. Learn more at hiddenunderwear.com

 

Isabella’s resilience and innovative thinking is simply incredible! Her ability to take a difficult situation + turn it into something that works for her is amazing.

This is what people with disabilities are taught very early in life. It’s all about what you make of it!

I’m going to share with you a small part of my story.  Yes, some of it is sad but I’m not sharing for you take have pity.  I hope this part of my story is eye opening and educational to you.  I hope it helps increase your awareness for the need for more funding and research on this disability.

My story begins back when I was 21.  I got pregnant (OOPS) and decided I was going to do this!  I had my regular doctors on my side and an OBGYN I had been seeing my whole life and their education on SB was me. Haha

I quickly got used to the idea of having a baby and fell madly in love with this little person inside of me.  Even though for 6 months it was quite the challenge.  I was VERY sick.  My kidneys stopped working. I had tubes coming from my back to carry urine to bags strapped to my legs that would get clogged all the time and have to be replaced while I was awake…WIDE AWAKE. 

My kidneys got so infected that I went into septic shock and could have died.  But I didn’t!  Finally, I was home feeling well and had a regular check up where the doctor told me there was no longer a heart beat.  I was 6 months along… I couldn’t believe it.  My body had failed me,  I was less of a woman.

Now fast forward to when I was 34 and met my now husband.  I informed him I thought I could not have children due to SB. Although he dreamed of having kids, he loved me more.  WOW!

We married and decided to do some research to see what our options were. We were so lucky to find a whole new team and they had worked with pregnant SB women who had the same complications I had in the past and they had healthy babies.  We went for it! During this pregnancy I was diagnosed with PTSD, was nervous and scared the entire time. Every minute was like a lifetime, but I did it!  With an amazing team of doctors and my hubby supporting me, everything was OK. Don’t get me wrong, I still got very sick this time but the outcome was much better. Now I have the perfect little family and I feel like my body isn’t a failure. I am perfect… Perfectly imperfect as I like to say.

So, I can’t help but feel like this may have been avoided the first time if there was more research, more support. Had there been more shared amongst the medical community to help educate them about how to care for a pregnant Spina Bifida patient, we could have been a family of four.

This is one reason why we are here today to talk to you.

Q: What is your SB warrior’s name?

A: Eliannie

Q: What type of SB does she have?

A: Myelomeningocele (no hydrocephalus)

Q:Where do you live?

A: California (Bay area)

Q: How can we continue to follow your story?

A:  Instagram @erica_eliannie

My Husband and I live in California (bay area). We have a precious little girl named Eliannie. She was born in September 2018:) at 38 weeks gestation via c-section (my water broke before our schedule c-section). We opted out from fetal surgery… our Drs recommended not to and our religious beliefs reassured us we didn’t need it. We found out she had SB very early on pregnancy around 13 weeks. In my second trimester we also found out she had clubbed feet and a small hole in her heart that closed a couple of weeks after birth. When she was born she had surgery to close and repair her mylo. We both stayed in the hospital for a month and recovered . I lost a lot of blood during my c-section and a blood clot traveled from my leg to my lung ( pulmonary embolism). I had two blood transfusions and was on blood thinner for 3 months to remove the blood clot. Meanwhile, Eliannie recovered very well and was discharged after a month in the hospital. She didn’t need a shunt or a catheter but needed months of serial casting to improve her clubbed feet. She also had both her achilles tendons cut to release her ankles and allow her feet to go flat. Now she uses AFOs to help her stand and we take them off when she crawls because the easily come off…. Fast forward to now she had many UTIS and we started to cath her, she doesn’t have sensation from her knees down and isn’t walking yet. We started using a gate trainer and we are still deciding what type of equipment will work best for her when she starts to walk. Eliannie is a very strong girl and we still have a lot to fight. We will fight through the rough times and hope for the brightest future ahead.

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It sounds like Eliannie has an amazing support system that will help to provide her with a bright future and extremely positive outlook. I can’t wait to watch this amazing little fighter grow!