I cannot thank the Bronson NICU staff enough for the level of care they gave Evelyn. They saved my daughter’s life!

Charissa Ostrom, Family Member

At our 20 week anatomy scan, our daughter, Evelyn, had evidence of possible genetic disorder. She had shortened femurs, soft spot on her heart. Her corpus collosum was
shortened and her jaw was more set back than normal. She also had a clubbed foot. My ob/gyn gave us recommendation of doing genetic testing but my husband and I decided not to go forward with it. We were referred to Bronson Maternal Fetal Medicine. We had two ultrasound’s there one around 22 weeks and the other around 26 weeks. We declined basic genetic testing again and
declined amniocentesis. My husband and I agreed that no matter what we would give our daughter a fighting chance. At 29 weeks I went into pre-term labor, spent two full days at Bronson stopping my contractions. On the morning I was going to go home, I went into labor and an emergency c-section was performed.

Our experience at Bronson was different.

When Evelyn was born, she was rushed to Bronson’s NICU (neonatal intensive care unit) and I was rushed into exploratory surgery. I had a volleyball size mass removed from my intestines as well as 5 feet of my intestines removed. I was diagnosed with stage 4 lymphoma. On the 4th day post c-section, I was able to see my daughter for the first time. Her nurses were super caring and her neonatologist was simply amazing. With me being sick, I truly felt my daughter was in the best care. Evelyn was intubated and honestly know one knew if she would survive and if she did we had no idea what kind of quality of life she would have. At the beginning, Dr. Scheurer was not 100% confident with Evelyn’s treatment and we were ready to be transferred to Michigan University.

Dr. Scheurer then told us about this huge genome testing, Project Baby Deer, and told us that she could only test 6 patients in a month and she chose Evelyn as one. This is when she was diagnosed with KAT6B Ohdo syndrome (genitopatellar syndrome).

This was a game changer.

Dr. Scheurer and Evelyn’s nurse Robin Garcia did research and read articles about the syndrome and they were confident that Evelyn could be treated. We were given the option to put Evelyn in a hospice home, but my husband and I were not going to give up on Evelyn we were ready to fight this battle.

Evelyn was treated for hypothyroidism. She was treated with monthly recurrence of pneumonia that basically was destroying her lungs. They were closely monitoring her small kidneys. She had a PDA and ASD that thankfully did not require surgery. At about 4 months, she had a trach tube placed in her trachea and a gastric feeding tube placed. At about 5 months, she has surgery to open her eyes, as she could not do it on her own. This was a lot to take in and a lot to handle, especially with me battling cancer, but her nurses and doctors took such good care of her. They gave me daily updates when I was hospitalized. They took pictures of her and would send them home with my husband to give to me. I could not have gotten any better care anywhere else.

Evelyn was in the NICU for 304 days. The NICU staff felt more like family every day I was there.

Her nurses Robin, Sara, Tiffany and Cindy spent hours a week teaching me Evelyn’s care and preparing me to bring her home. With all of Evelyn’s set backs and my own set backs, we all thought Evelyn would never get home. It took 10 months to get a home nurse. Ruth was a huge part of my coping. Her kind words of encouragement gave me so much hope for Evelyn. She made me feel like a good mom and made me feel like I was not alone. Carolyn worked extremely hard to find me home nurses. I did a lot of fighting to get Evelyn home. I had to really show Carolyn, the nurses and Dr. Scheurer that my husband and I could indeed care for Evelyn at home.

On August 10, Evelyn was discharged from the NICU. I am her sole care giver with the help of two nurses who come a couple times a week. Evelyn is doing great! We are currently weaning her off of her oxygen and ventilator. She is sucking on a bottle, eating pureed foods, and is as happy as can be. She loves to play and she is getting stronger every day. She has been home for 2 months and so far she has not got sick. She gets monthly IgG infusions to boost her immunity. If it was not for Project Baby Deer genome testing and Dr. Scheurer, Evelyn may not be here today or she would still be laying in a NICU bed. I love caring for Evelyn, she has given me a different perspective on life. She just lights up my world every time I see her. Our lives have changed but I would say for the good.

I cannot thank the Bronson NICU staff enough for the level of care they gave Evelyn. They saved my daughter’s life!

For any parent going through something similar do not give up. Lean on your nurses for support, ask questions, do your research, and most importantly do not give up hope. Your life will be changed and you may not live a “normal” life, but it will be normal for you.

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