Help Baby Chloe

Baby Chloe is one of my great nieces, who was born with Spina Bifida, Chiari malformation II and Hydrocephalus. She has a long road ahead of her, as do her parents, my niece Amanda and her partner Cody in caring for baby Chloe's unique needs.

Just a little bit of education on Baby Chloe's diagnosis.

With the diagnosis of Chiari Malformation II, cerebellar tissue protrudes into the spinal canal; this condition than can cause hydrocephalus (accumulation of excessive cerebrospinal fluid in the brain). Chiari Malformation II is almost invariably associated with a form of Spina Bifida called Myelomeningocele. Paralysis below the spinal opening is associated with Myelomeningocele which causes lack of bladder and bowel control.

Baby Chloe will need constant diapers until she can get surgery, hopefully around the age of 5 when she can get a stoma and catheter. Chloe will not be provided with state assistance for incontinence until she is 4. With medical bills piling up, Amanda & Cody would be grateful for any donations so they can purchase needed supplies and other expenses. Amanda will not be able to work once Chloe is home due to her needs being so complex. Prayers are always appreciated. Thanks, and God Bless. Below is Chloe's story written by her Mom, Amanda.

-Peggy

Tuesday, April 20th, we had our anatomy ultrasound, where we got the confirmation we were having a girl; little did we know we were about to get some life-changing news. Two days later, my OB called saying something was wrong with the baby, and he wasn't sure what. He told me he referred us to Mayo Clinic for a more in-depth ultrasound. The day after the call from my OB, Mayo Clinic called. That following Monday, we were at Mayo, where we had our ultrasound and received the diagnosis. Our little girl had myelomeningocele (the most severe type of spina bifida) along with Hydrocephalus (fluid on the brain) and Chiari malformation II (the brain in the spinal cord). At that time, the doctors weren't sure of the severity of those two. That same day the doctor reviewing the ultrasound sat down with us and gave us three options, termination, surgery to close her back after she's born, or to close her back while she was still in the womb. Cody and I decided on surgery while still in the womb. The rest of the week was followed by many more appointments, testing and blood work. Little did we know that we had a team forming to take care of us as we had to act fast because there was only a tiny window on when this surgery could be performed. The weeks leading up to surgery had me going to appointments twice a week, followed by ultrasounds after ultrasounds. Surgery was scheduled for June 2nd; I was 24 weeks and two days. The surgery happened, Chloe cooperated, and recovery was underway. After two weeks in Rochester being monitored, I was sent home with medication to prevent contractions and monitor my blood pressure.

3 weeks after surgery I ended up on the hospital contracting and was admitted for observation. I was discharged the day before my birthday. My birthday came and with that a fever, body aches and chills, the day after my birthday I went to the hospital to be checked out as my fever wasn't getting better and was admitted; contractions were happening, testing was being done only for them to tell me they don't know what's wrong with me. In the meantime, I was put on 2 antibiotics 4 days later my fever broke a week later my antibiotics were done and Chloe started failing her B.P.Ps and NSTs for another week I was being monitored around the clock. That same week Chloe's head had grown substantially, and I was given the news I wasn't leaving the hospital until Chloe was delivered. I begged and pleaded to let me go home for the weekend and on Monday were back prepping to deliver Chloe via c-section. At 32 weeks, Chloe was born at 954a weighing 6lbs 1oz and 18.5" long. (Chloes legs were hypertensive when she was born which means they hit her in the head as she doesn't have the butt or hamstring muscles to lay them flata). She was Baptized, and rushed to the NICU. I was discharged two days later which happened to be the same day, Chloe had shunt surgery to help decrease the fluid from her head.

We met with a doctor from every department, from urology to neurology to cardiology. We were told she'd never be able to breathe on her own or eat; she'd need a g-tube. Chloe has since proved them wrong. She's improving every week. She is eating from a bottle which uses a lot of energy, so she sometimes requires oxygen assistance. Because of Chloe's lesion on her lower back, the nerves that control her bowels and bladder have been damaged. She has no control over them; they just leak, which causes her skin to break down.

Chloe is the true definition of a miracle. She has been in the NICU for over a month now and is improving more daily. Her legs have more range of motion; thanks to the Occupational Therapy team for making braces and working with her, she can lay her legs flat now and has some bend in her knees.

We are uncertain of what the future holds, but we know that Chloe is a little fighter and amazes us more every day. Chloe has grown my heart and my capacity to love and love well.

-Amanda