Tatum's Tales: Jane

Jane's Story

Jane Ann was born at 34 weeks on July 19, 2020. Jane was born with Spina Bifida. We found out at our 19th week ultrasound and immediately started researching fetal surgery. We live in Spring Hill, TN which is about 35 minutes to our amazing children’s hospital, Monroe Carell Jr. Children's Hospital at Vanderbilt. But unfortunately, Covid was going on in our world and Vanderbilt wasn’t doing surgeries like this. So, we were referred to CHOP (Children’s Hospital of Philadelphia.) We learned that I was a candidate for surgery and on April 26, 2020 I left my other 2 amazing girls; Mary Elizabeth (age 16 now) and Annabelle (age 14 now) and drove to our new home for the next month. We lived in an extended stay hotel down the street from CHOP. On April 29, 2020, I had fetal surgery, and our little miracle was born for the first time. I still marvel at the thought of what Jane, and I went through and that God has made incredible surgeons and nurses who save lives. Her sweet little spine was closed up and now it was time to rest. We were able to go home in June and the Maternal Fetal Clinic at Vanderbilt took over our care.

Jane also had Hydrocephalus and we knew she was going to need a shunt when she was born. We became worried each week that I went to get checked out because Jane’s ventricles kept getting higher. We also got some disappointing news while we were still in Philadelphia at CHOP. We had been learning about her hindbrain and how she had Chiari Malformation 2. We were hoping and praying and thought it would reverse after the fetal surgery but hers did not reverse. It stayed the same. So we were not at all prepared for what the effects of this would be on her.

Jane stayed in the NICU for about 4 weeks and then we were able to bring her home. She drank her bottles well and was sleeping and growing. But in September 2020 something scary happened. I was trying to feed Jane her bottle and she started choking and I called 911 for the first time. We rode in an ambulance to Vanderbilt Children’s Hospital and that was the beginning of many hospital stays. Jane stayed for about 31 days. During that stay Jane was diagnosed with Central Sleep Apnea. She also failed a swallow study and got a feeding tube. Jane was aspirating. During this first hospital stay Jane went into cardiac arrest. When the nurses pressed the code blue I have never seen so many doctors and nurses run into a room to try and save a life. I was so scared and just didn’t even know or understand what was happening to my baby. I just kept asking this one sweet nurse, Is my baby alive? Jane was gone for about 2 minutes and then came back to us. Then immediately they took us to the PICU and intubated her.

Jane was able to come home on oxygen and with a feeding tube. She started PT, OT and speech therapy at home. We became members of the

DME world and started learning all about Jane’s conditions. I think I googled every one of her conditions so many times. I would go to bed

and read all about what Chiari Malformation 2 is and the symptoms and treatment for it. Jane seemed to be doing well for a while and was even able to go to a school we have here in Franklin TN that takes special needs children. It is called High Hopes Development Center and it is

incredible.

2021 came and Jane was still having so many secretions and I was very interested in a second opinion about the Chiari. She seemed to have every symptom and I kept wondering if a decompression would help with all these symptoms. So we called CHOP and spoke with the surgeon who performed our surgery and talked with him; Dr. Gregory Heuer, MD, PhD. Dr. Heuer suggested we put a programmable shunt in and see if that might help with how much CSF is drained and to see if it took the pressure off of her brain. Dr. Heuer called Jane’s neurosurgeon Dr. Bonfield, and they discussed all of this and Dr. Bonfield agreed and said he would take Jane’s shunt out and put a programmable shunt in. We were hopeful that this might relieve some of the symptoms of her Chiari. We were literally one day before the surgery. I took Jane in for all of the Pre-op appointments and she seemed extra junky and a little sick. She had more than usual secretions and just seemed like she was starting to get sick. One of the nurses had mentioned that if she is still like this in the morning, the Anesthesia team may not want to go on with the surgery. She went on to explain about doing surgery when you are sick and have a fever. Our last appointment was with her ENT. When we got there, they were doing her vitals and her oxygen was in the 70’s and 80’s. They then said you are going to the ER and we are calling an ambulance. We got to the ER and never left until June. That was the next long hospital stay. Needless to say, Jane did not have the surgery to have the programmable shunt placed in her brain. Jane was having such a hard time breathing and keeping her oxygen in the 90’s. She was intubated I think 3 or 4 times during this stay. She would do well and then go downhill fast and wouldn’t be able to breathe on her own. I

just didn’t understand it.

EVERY symptom of Chiari Malformation 2-central sleep apnea, aspirating liquid, dysphagia, her left side is her weak side, and she had noisy breathing. So on May 14th, 2021 Jane got her trach. Jane’s big sisters were able to visit her and the second she saw them it was pure joy on everyones face. Jane’s face lit up and she couldn’t stop smiling and laughing.

Fast forward to today-March 13, 2024. Jane Ann is rocking it!! She got off the vent and now only needs it when she sleeps. She is meeting her

milestones and wakes up everyday smiling. She is tolerating her passi valve and is getting stronger each day. But as usual I still go to bed and I still google Chiari Malformation 2. I still read about the treatment and surgery for it. I still wonder would Jane be a candidate for the decompression surgery, or when you look at her images can it not be fixed, can the hindbrain reverse, what if a decompression helped relieve some of her symptoms. I understand a decompression isn’t an easy surgery, but I just want an expert to look at her images and tell me what they mean, can you fix her Chiari Malformation 2? If she had a decompression would that relieve some of her symptoms? Would she be able to swallow and not have central sleep apnea?

This is only part of Jane's story. Jane is our hero! She's our medically complex miracle. That means that she's a living miracle. Jane will always require medical care. Instead of thinking of this negatively we say it proud and positively! Jane has defied the odds so many times by God's Grace. Jane had brain surgery on December 30, 2025 for Chiari Malformation 2. She is currently back at Children's Hospital of Philadelphia for a surgery she had a few days ago called Complex Tethered Cord Surgery. Please pray for her recovery!

Thank you so much for taking time and reading about our sweet angel, Jane. Jane is our world and we love her more than anything!! Follow Jane's Journey: https://janesjourney.blog/