October is Spina Bifida Awareness Month

I've held on to this part of my story for the longest time. Part guilt in the sense that I've blamed myself for this 'defect' my daughter has (news flash- it wasn't), part being a very private person and just didn't wish to share this part of my journey, and part "no one could care less & can learn from this". A conversation I had with a new mother recently really shifted my perspective on sharing my story, all of it.

If you had asked me prior to August 6,2014 what is Spina Bifida and how on earth do you even spell Hydrocephalus I would have come up blank, like ummm what?

On August 6, 2014 we were introduced to both and we were about to be schooled.

Many of you who know my story, knows that NaturalAnnie Essentials came about as a result of this experience. In 2014 I gave birth to my first child Tiffany. I’ll give you a quick run down...

12:06 am

The baby was finally born  after hours in labor and there was an immediate sense of urgency, almost panic as the baby was not breathing and was born with the umbilical cord wrapped around her neck. The doctors were able to release her and came over to let us know that Tiffany was going to need surgery right away. They then proceeded to show us what was very unfamiliar to us, an opening in her back. My mind was blown! I thought to myself HOW can a baby be born with a ‘cut’ of this size. The got her to breath, and within hours when her breathing was stable enough to travel she was transported to Yale NICU.

4 am

I held my baby for the first time and was left with lifeless legs and a blown mind…

Now the baby was in transit to the NICU for an emergency surgery while I was literally stuck at the hospital as my legs were pretty much dead from the epidural. I wouldn’t be able to leave the hospital until I was able to walk.

Fast forward to 10 am

I was now walking. As wobbly as I was, I was determined to be out of that bed and on my way to the NICU. I checked out at 11am.  I still had no idea of the severity of the situation.

The NICU

We arrived at the Yale NICU and by then Tiffany had already done her closure surgery. This surgery was to close the opening in her back. We also found out she had a minor stroke while in utero and they were showing a hole in her heart--- SIR WHAT?  We were then thrown into crash course I called “Spina Bifida University”.

Spina Bifida

According to the Spina Bifida Association Spina Bifida is the most common permanently disabling birth defect in the United States. Spina Bifida literally means “split spine” and happens when a baby is in the womb and the spinal column does not close all of the way.

I’ll never forget the day the doctor walked into the waiting room where I sat with my little gang (husband, mom, dad, grandmother, brother, and sister.) feeling numb the entire time as the doctor gave us all the limitations of my newborn. What struck me the most was when he said she may not be able to walk. I remember sitting there with a blank stair, with tears streaming down my face, I have failed my child. I could not move.

As we dealt with our new reality we learned that Spina Bifida affects people in different ways. Some conditions associated to spina bifida according to Spina Bifida Association are: Mobility, bladder Bowel & gastrointestinal disorders, Latex allergy, Obesity, Skin breakdown, and more.

And then there was Hydrocephalus

About a week later were were informed that Tiffany developed hydrocephalus as a result of the spina bifida. The hydrocephalus association defines hydrocephalus as a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF), resulting in pressure on the brain. She would need to go back into surgery, this time brain surgery to insert a shunt. The shunt is a flexible tube, which is placed in the ventricular system of the brain. It diverts the flow of CSF to another region of the body, most often the abdominal cavity, or heart, where it can be absorbed.

My little fighter

Tiffany spent a little over a month in the NICU. She is a fighter, and seeing someone fight from birth was inspirational beyond words. Once we came home the true test began. A week into being home we realized her skin was starting to break out and her shunt incision was not healing. We had to rush her back to the hospital where they had to then remove the shunt and drain the area to prevent any infection. A day later they had to do the process all over again to insert a new shunt.

Soon due to all the medication she was on, her skin started to break out. The prescribed medications we were using did not help, and so we started to look into natural remedies  (the old school Jamaican in us came out in full force) see more on that here . All hail to shea butter and essential oils, because it was shortly after we started to use these natural remedies that we finally started seeing improvements in her skin.

The outcome

We are thankful. We are blessed.

This experience has opened my eyes to so many things. Though it’s nothing to be ashamed of I never openly speak about Tiffany’s conditions, perhaps out of fear. But from speaking with families who share the same experience I’ve realized we have the unique opportunity to educate others on this disability. She is now 4 years old and we are blessed to have this little fighter...She doesn’t look like what she’s been through is what I often say when I look at her, because honestly, you wouldn’t be able to tell she has spina bifida just by looking at her. Though she has some limitations as expected, she is able to walk, and that in itself brings me so much joy.

Help us make a difference

October is Spina Bifida Awareness Month, and so for the month  NaturalAnnie Essentials is giving back 5% of our sales to one of our favorite organizations- the Ronald McDonald House Charities of Western Massachusetts . You can make additional donations here as well.

I was skeptical of charities until I experienced first hand how they worked. While Tiffany was admitted to the Yale NICU we were offered the opportunity to stay at the Ronald McDonald House of New Haven. We had no idea this existed and we took the opportunity to find out more about them during our stay there- might I add we stayed there free of charge and were provided meals. We lived roughly 45 minutes from the hospital, and while it was no question if we would be traveling day after day to be with our baby girl, we knew how much it would cost us and how tired we would be. I’ll never forget how they made us feel. Since then I’ve been able to go back and offer aromatherapy sessions and just to chat with the families as I know what it’s like going through that rough time.  Now, I’d love for you to help me support this amazing organization as we can help them to spread the love and warmth to other families through our donations, I assure you there is no better feeling!

You can also donate via our Facebook page here.

Do you know of someone with Spina Bifida or Hydrocephalus?  Comment below or send me an email if you'd like to talk to someone.

Learn more about hydrocephalus here

Learn more about spina bifida here

Xoxo,

Annie