I am sharing our story with the hope that someone will be empowered to investigate their choices and make their own health decisions and those on behalf of their baby. Having hospital staff tell a parent to do something (especially a mother immediately postpartum) does not necessarily mean it is always in the best interest of the patient.
Mayzie today ~ healthy and happy.
A mother spends months dreaming of the day her child will be born. From the moment those two little lines appear, she knows her life will be forever changed. She waits in anticipation for the glorious day when she gets to meet the little being that she has nourished and grown inside herself. It is a relationship only a mother can understand. We dream of the day our baby is born; the hugs, kisses, smiles and happy tears.
However, not everyone’s life can begin the way we dream of, and when the hardships stem from hospital staff, people need to know. This is only one story but in telling my own I have realized it is more common than many people realize. If more stories are shared, maybe our babies can deliver their own babies with safer, less invasive hospital treatment.
Mayzie was born on January 30, 2012 at 7:49 am. She was perfect and her Apgar scores proved it. With a score of 10, I was a proud mommy. After all, my baby had just passed her first test with flying colors! We spent the day staring at her in awe and overflowed with happiness when her older sister got to come to the hospital and meet her. We were all in love. It was the start of a whole new life for all four of us. As the saying goes, our family had just “grown by two feet.” We couldn’t have been happier.
Throughout the day there were a few times when I looked at Mayzie that I noticed a purplish tint to her skin. I told my husband and we decided it was bruising from birth. Our oldest had been born with quite a bit of bruising so discoloration was nothing new to us.
About 5:30 that evening the nurse came in to give me medicine. Mayzie was a bit purple at the time so I pointed it out to the nurse, just to get some reassurance that everything really was okay. She picked her up and carried her to the incubator where she checked her oxygen levels; they were in the 70s. She let us know that she was going to have to go to the nursery as this was not normal.
Upon going into the nursery they started Mayzie on two days of antibiotics. They told us that it was standard protocol -- any baby who came through those nursery doors was put on antibiotics, no questions asked. We still had complete faith in this hospital staff and waited patiently as they put an IV in our brand new bundle of joy and took blood to run tests for infection. They told us that they needed to rule out sepsis as well as any possible cardiology or neurology problems.
That night, around 8:00, Mayzie had another apnea spell. The nurse came over and gently lifted her and put her into her incubator. She watched as her oxygen levels dropped from the 80s down to the 70s and eventually to the 20s. She did nothing to try to make her breathe again. No light foot tap, no touching her face, nothing. When she hit the 20s the nurse finally began to work on starting her breathing again. She was unresponsive for about 15 seconds and the nurse had a hard time getting her back after she had dropped so low. It was a very scary moment as both my mother and I just sat back watching, putting all of our trust in this nurse. The day ended with no more episodes.
The next day, January 31, while my husband was gone, they came to me and told me they needed to do a lumbar puncture as meningitis was a possibility. After calling to discuss with my husband we decided to deny the procedure unless further reason arose. Upon telling them we were going to decline the doctor let me know that if it wasn’t done that day the test would be skewed as the antibiotics she’d already been on for 24 hours could hide what they were looking for. She explained to me that meningitis can quickly kill a baby her age and that we were risking a lot by not doing the procedure.
Scared of making the wrong decision and something happening, we allowed the lumbar puncture. I was told to leave the room and they would be in to get me once they were finished. About 45 minutes later the doctor came to my hospital room where my husband and I were waiting. She let us know that both she and her colleague had attempted the puncture but they were unable to get enough fluid to run for testing. She told us that they would try again tomorrow. We refused to let them do the testing the next day as they had already told us that any tests ran after that time would be too skewed to determine results.
We decided that if we wanted to get anything done we needed to have a sit down with the doctor and figure out the plan so we were all on the same page. We went to the nursery and had our heart to heart with her doctor and the nurse on duty who told us that they wanted to run a head ultrasound and echocardiogram the next day. They told us that if there were no issues before then and if everything looked okay during the procedures, that we would be going home on apnea monitor on February 2nd.
The next day, February 1st, we went into the nursery to find a new doctor. She immediately told us that her opinion was for us to transfer to a neonatal ICU at a nearby hospital as her “inexperience limits [her] ability to treat [our] daughter.” There had been no episodes since 8:00 p.m. on January 30th and she didn’t seem to be getting worse, so we declined. The doctors came in to run the previously agreed upon head ultrasound and echocardiogram and everything came back perfect. At this point we thought we would be heading home the next day as that was the original plan -- we weren’t.
That afternoon the doctor called us to the nursery for another sit down. She let us know that she needed to run a herpes culture on Mayzie and start her on more antibiotics. She said that the herpes culture would take up to three days to come back and that she would be on the antibiotics until it came back negative. Both my husband and I were certain that herpes was out of the question. I had never had an outbreak and he is checked often just for being in the military. We let them know that they were welcome to do the culture but we were not allowing them to start her on more precautionary antibiotics. They never ran the culture.
During this sit down we decided that there would be no more invasive testing unless Mayzie took a turn for the worse and it was absolutely necessary. She told us that she did not feel comfortable releasing us the next day as originally planned and that she wanted to start a 24-hour EEG the next morning to rule out possible seizures being the culprit. She assured us that it was noninvasive and reluctantly we agreed.
The next morning, February 2nd, I woke up and walked down to the nursery to find Mayzie’s head completely wrapped in gauze with numerous leads hooked up to her. The first thing the doctor said when I walked into the room was that we were going to need to put a tube down her throat for feeding. She let me know that there were no techs working in the hospital that could reattach any leads if they were to come off and that without all leads attached the testing would be invalid. I was furious and went back to the room to tell my husband what was happening. We decided to refuse the 24-hour EEG as we had originally agreed on, and wanted no more invasive procedures. They agreed and took off the leads after an hour, telling us that they had the information that they needed.
That afternoon, while relaxing in my room, I had a knock on my door. Once again, my husband was gone; it seemed to be their ideal time to talk to me. The door opened and a lady walked in that I’d never met before. She introduced herself to me as the hospital social worker and said that our case had been referred to her. She let me know that if we signed an Against Medical Advice form to leave the hospital that we would be turned over to Child Protective Services. She warned me that they could take our daughter as she had been told that we could be putting Mayzie’s life in danger by leaving and refusing treatment.
Her visit was the last straw. We started pulling every card we could to get ourselves released from that hospital. It was clear that they were planning on holding her there and running every test that they possibly could. She was turning into a human lab rat. After talking to many very high hospital staff members they let us know that we would finally be released the next day. We were very thankful to finally have a plan.
February 3rd we finally got to take our brand new, healthy baby girl home. She was on an apnea monitor to assure there were no more episodes like the ones on her first day here. We were happy to get her home with her older sister and start our lives as a family. Mayzie is now 10 weeks old and has never had another episode. She is a perfectly healthy little girl and a beautiful addition to our family. You would never know by looking at her just what she had to endure her first week of life. ♥