Hello, I am the mother of an amazing little girl named Charli Eva-Louise. I'm going to provide you with some background information before I get started.
Summer 2012 I was diagnosed with infertility. I was told I would never be able to carry a child in my body to full term. The problem was that I could conceive extremely easily but my immune system will fight my unborn child until terminated. I felt horrible and didn't understand how something that I've looked forward to my entire life could be taken away. Now, let's forward to May 2014.
After numerous miscarriages I was given the option to try two forms of fertility treatment and extreme high risk monitoring. I started my medication June 1st 2014 and had a procedure June 6th 2014. After a miserable day of crying and screaming then finally giving up forever I decided to throw my pregnancy tests away. My cousin pleaded with me to just use the last one. With tears on my face I gave in. On that day June 22nd 2014, I found out that I was 2 weeks pregnant with my blessing, my daughter.
While pregnant with Charli everything seemed well until I became extremely ill my second trimester. I was informed that my body was trying to lose my child. My blood pressure would range from extremely high to extremely low. My pulse went all the way down to 40 but I was going to do everything I could to bring my daughter into this world. From the severe edema (extreme swelling), the pessary that was inserted to keep her in my belly as she was trying to expell at 6 months, the heart monitor I had to wear, and the pain. All worth it for her.
At 5 and a half months pregnant was told my daughter had IUGR (intrauterine growth restriction) and that it will be extremely hard for her to gain weight, has to be monitored even more closely and can have complications the remainder of the pregnancy, delivery, and later in life. I had to come to the hospital 3x a week so the doctors can physically watch her movements and count her heartbeats. I was put on restricted bedrest and had to quit my job. Monday, Feb 22nd 2015 at a normal check up 4 days before my scheduled induction, I was told that I ran out of amniotic fluid and that I had to have my csection right away. When arriving to the hospital the doctors didn't follow the notes left in my record by my obgyn and high risk doctor. Despite being diagnosed that I can't give birth any other way than a csection because of a narrow pelvis, the doctors made me attempt to give birth vaginally. This went on for 4 days until Feb 26th 2015, my daughter went into distress. Due to not having enough time to give me an epidural the doctors performed a csection on me without one. As a result my body went into shock and my daughter had her first stool while still in my body. She swallowed stool and blood and was sent to the NICU.
The next 9 days were a blur. My daughter was able to come out of the NICU after a few days but I remained unstable. After I flatlined 3 times, and had 2 blood transfusions, my fighter and I was able to finally come home. When I looked at my daughter she had bruises all on the side of her face. I read the biopsy of my placenta and it was bruised, grey, had leisons and the umbilical cord was torn that connected her to the nutrients that I was providing her. My body was literally trying to shut me down from nurturing my angel but she made it!!!!!
The next 3-4 months went by smoothly until I noticed my daughter having trouble drinking her bottle. I had to switch her formula 4 times just to have her drink something. Something just didnt seem right. After switching countless primary care doctors and advocating for my child I was finally given the option to have a swallow study after she had repeatedly stopped breathing and would choke when drinking her bottle. We found out that she has what's called pharyngeal dyspasia. When she drinks liquids her brain doesn't tell her reflexes to close her air way. As a result everything she drinks pours directly into her lungs and her brain doesn't have her recognize the pain reflex that would cause us to gag. She could only have liquids that were extremely thickened with prescription corn starch. When it came time for her to crawl, we noticed that her legs were locked. After further testing we discovered that with the reflex delay was diagnosed as hypotonia. Doctors stated that it was neurologically rooted. With the MRI complete I was informed that my daughter had brain damage. BRAIN DAMAGE.
After furthing testing we found out that she has CHIARI MALFORMATION. CM is a condition when her brain is falling through her brain tonsils in the back of her skull. As a result, her brain is pressing on her spinal cord. My world stood still. From sick days, weekly physical therapy, weekly occupational therapy, doctor appointments, emergency room visits, and hospital admissions...I was missing alot of work and being her sole provider, I didnt know what to do or who to turn to. My daughter was denied for SSI...denied. I had to quit working from October 2nd 2015, until April 5th 2016. Since then I started working and try to work as many days that I am allowed but her health has since started declining so I am constantly missing work again. She is 18 months and 19 pounds, and unable to walk due to her chiari malformation. She completely shocked me and herself when she attempted to walk a few days ago despite all of the pressure in her brain. She has always been a fighter!
She has been hospitalized two more times this year due to having pneumonia in her lungs, and extreme vomiting. During her last admission in June 2016, we found out her brain damage has increased from 18mm to 24mm in length (CM is diagnosed when you have 3-4mm of brain slippage). Her neurosurgeon and neurologist stated that she has one of the worst cases of CM that they've ever seen. The only thing that can help my daughter, there isn't a cure, is decompression surgery. It will help improve everything that she is going through and will be able to walk, laugh & scream without pain, and drink liquids like other toddlers. She still goes to therapy weekly at this moment, is on medication, and struggling to even maintain her weight of 19 pounds. Her surgery is set for September 2nd, 2016 and has potential side effects of follow-up brain surgeries. Her recovery will take 8-12 weeks and I am her only caretaker. There aren't any programs that my child qualifies for to help financially or even physically for home care.
I am asking can family, friends, friends of friends, anyone donate to help me provide for her during her recovery until I can go back to my current job that will be waiting for me. This has been a battle these past 2 years and I've stayed quiet but we truly need help. She is a miracle in every way. Anything that you give will be very much appreciated in helping us, thank you for your time.
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