Support for Charlotte's Fight and Future

Nicole Whitaker is organizing this fundraiser.

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Hello everyone, My name is Nicole Whitaker. My husband, Christopher, and I are trying to raise money to help with our daughter Charlotte. Charlotte was born 5/25/24 at 1:19 am. The pregnancy was a rollercoaster to say the least. We were given a diagnosis of trisomy 13 when I was about 25 weeks along. We were told she would most likely be incompatible with life. We were far enough along that we both had felt her moving, and we already loved her so much. It was devastating to be told such grim news. We kept going though, not giving up on her. She seemed to be growing and developing in many ways as though it was any other pregnancy.

We researched as much as we could about trisomy 13. We joined support groups for families of trisomy 13, and found that some children do survive. We decided to be hopeful, pray for the best yet be prepared for the worst. Around 34 weeks I developed severe hypertension and began to swell all over, so my doctor started to worry about Preeclampsia. Luckily it never developed into that, and we induced labor at 36 weeks and 6 days.

They said Charlotte wasn't likely to survive birth. She came into the world and took her first breaths all on her own. Her first cry was like music to our ears, she was breathing. They put her on my chest and she was so beautiful. Her dad cut her cord, and then she was put on pressure oxygen as a precaution. Once they knew she was stable they took her NICU to evaluate her further. She was born with a cleft lip and palate. She had an omphalocele that was tightly bound with part of her intestines inside. They were worried about her heart, so an echocardiogram was first on the list after making sure she stayed stable breathing. Her echocardiogram looked pretty good. She has a tiny muscular vsd but nothing life threatening according to her doctors. She was deemed stable enough to undergo surgery for her omphalocele. 3 hours later her intestines were returned to were they were meant to be. However to perform the surgery she had to be put under and was on a breathing tube. A couple of days went by, and she was noticably breathing over the breathing tube. It was scary, but we decided to have the tube pulled. Hearing her cry again for first time when it was pulled brought tears of joy to our eyes. She was put back on CPAP at 6 L at 21% and was then given an MRI.

Neurologists came to tell us about her brain structure. They showed us the MRI scans. She has a slightly under developed corpus callosum and is missing a bit of white matter in the frontal lobes. They said she may have some developmental issues in the future, but nothing that should be life threatening as long as her signal stays strong like it has been.

We noticed that she had been struggling with her glucose levels, so Endocrinology decided to test for hormone levels. All of this was happening, we were only 8 days in. We were told she was stable, so we decided to go home to see our other children, and make sure errands were run for them and the household.

The next morning we received a phone call, Charlotte had multiple seizures while we were away. She had a few that caused DSAT and Apnea, and we needed to make some decisions. We dropped everything and went back to the hospital. We agreed for them to give her Keppra and to monitor her on EEG. After 24 hours, it seemed the Keppra helped so she was started on a routine of it to manage her seizures.

Her labs were all over the place though. Some due to lab error and machine error, but the glucose levels were consistently low, sometimes dangerously low. She was then tested again after our insistence, and it was discovered she has hyperinsulinism. This was causing the persistent hypoglycemia. She was started on medication for that on 6/3/24.

On 6/5/24, Charlotte had a breathing event. She started having difficulty breathing, and labs showed acidosis. They performed an emergency echocardiogram to make it wasn't her heart, and it wasn't. She was having trouble exhaling enough carbon dioxide, she was taking in plenty of oxygen, so they decided the best thing to do was to re-intubate until doctors from multiple teams and come together for her, today or tomorrow. Right now they believe the cause is an airway obstruction, they just aren't sure what kind yet. They will investigate with an endoscopic camera and everyone, including her doctors are hopeful that it will be an issue that can be fixed.

So much has happened in a short period of time, but the most important thing is she is alive. She is a fighter, a mighty little warrior who seems to want to be on this earth, and we want her to be here as well, more than anything. They tell us that if she continues to go down the path she has been that she will get to come home. This our goal and their goal for her. Her Bubbies and Sissys want her to come home too. They have loved her since she was in their Mommy's belly.

She will need full time care of course, which her father will provide, especially once my maternity leave is over. He has had to miss work before her birth and since her birth due to all the complications she was facing.

Now it seems as though she is stabilizing, but everyday is a new day for her. We have to take life a day at a time now, which makes preparing long term a bit difficult.

What we do know however is that we need to acquire a larger vehicle. The small sedan we currently own is just not going to suffice. We need to make sure that we can prepare our home for her as well. The back and forth to Indy from Anderson, having to eat at the hospital, being out of work for weeks has taken a toll on us financially. The worrying about her, the constant rollercoaster ride of emotions, lack of sleep, stress of the unknown, trying to be present for our other children as well, that has been exhausting mentally. We are determined, because our little Charlotte seems determined to survive.

She will have special needs, and we want to make sure we meet them for her. Please help us help Charlotte, our beautiful little warrior princess.

Some photos from the past couple of weeks.

*Daddy holding Charlotte's little hand, making sure she knows we are here by her side...