“When I first found out I was pregnant with my second child, I had a recurring dream where I was in a room filled with blood and I was drowning, begging for my children. I could see their little hands reaching but I could not get to them. The day of my induction I told the intake nurse about my dream, that I was terrified of bleeding and dying. She laughed. And she assured me it never happens and I was safe. I trusted her. I trusted every professional in the room would care for me and my daughter.
My husband, Josh, and I passed the time watching movies, discussing how excited we were for Kaia to be born, all our hopes and dreams, how fun it would be to see her and our son, Jensen, running around together. A house full of love. I had no idea while we were laughing, watching Mission Impossible, Kaia was dying inside of me.
Hours went by and I began to feel very weak and was given oxygen. Alarms were going off and the nurse told me this was normal, even as the doctor and midwife were frantically whispering in the background. I tried to tell her, ‘This is my dream! Something’s wrong!’ but I passed out. I woke up in another room. All I could hear was panic and screaming. I felt an intense burning sensation across my belly, and my skin pulled open and then the doctor said, ‘Baby is out.’ Silence. ‘I can’t hear her crying,’ I said right before I passed out again.
My husband held her tiny limp hand all the way to the helicopter, where she was airlifted to a different hospital with a more equipped NICU. I woke up again. My neck ached because my body would not stop convulsing as blood poured out of me. I looked up and saw someone in scrubs, her hands red with blood and she was crying. More screaming and panic in the background. I started vomiting and it dripped down into my eyes. ‘I can’t see anymore,’ I tried to say before everything went dark again.
I woke up alone the next morning and I heard a nurse gasp and yell I was awake. She extubated me. People I did not know kept coming in and staring at me in disbelief, crying. I did not understand what was happening. She told me that Kaia was at another hospital an hour away and they were not sure if she would live, that she had suffered a severe brain injury from lack of oxygen to her brain, known as hypoxic ischemic encephalopathy (HIE). I had gone into hemorrhagic shock, they had to do a hysterectomy, but the bleeding continued. My iliac artery had been damaged, and I had a tube coming out of my groin that was holding the artery together and I could not move my leg.
I needed 44 units of blood, my heart had stopped, and I needed the paddles to bring me back. They told my husband and mom I could die, and they needed to prepare for that. They thought I would stay in a coma until I died, but somehow, I had woken up.
The days I spent in the hospital were harrowing. I spent most of it alone, so someone could sit with Kaia and Jensen. I had Josh take pictures of Kaia’s little hands and feet, every little part of her, so I could feel like I knew her. He told me she had blonde hair and he thinks blue eyes and my lips. I spent 5 days in the hospital until they thought I was well enough to leave.
When Josh wheeled me into her room in the NICU I was shocked. She looked lifeless. Covered in wires, her beautiful face, swollen, and obstructed by breathing tubes. ‘She hasn’t responded to anything,’ her nurse whispered to me. It took 3 people to transfer her limp body onto my chest. Skin to skin to ventilator. I felt terror. I could not take my eyes off of the monitors, the machines breathing for her, feeding her. I slid my finger into her tiny hand, and told her how loved she was, how I fought so hard to be with her, that she was everything to us. Slowly her fingers started to curl around mine. ‘Oh my God, she is breathing over the machine!’ the nurse exclaimed. She called the attending over and some other nurses and everyone was crying. It was like Kaia had waited for me. She knew I was her mom, despite everything, she was fighting for me, she knew me.
I soon grew too weak to hold her, and realized I was bleeding and started shaking from a fever. I was terrified. I thought I would not survive a second time. I sobbed over everything I would miss with my kids and I made videos telling Jensen and Kaia how much I loved them, so they would have something to remember me by.
I was readmitted to the hospital and it was another 3 days before I could see my children again. We met with the NICU doctors for a family meeting. At the time Kaia didn’t respond to light, or have the ability to swallow, or really move her limbs. The neurologist told us that this was most likely because of a heavy seizure medication she was on, and as they weaned her off of it her reflexes would come back and she might be developmentally delayed, but she would be all right. The second time I held Kaia, she opened her eyes for the first time. She waited for me again. I spent every day she was in the NICU just holding her, and staring off into the distance. I was so hopeful and excited to bring her home, and then one day she had a massive seizure and required re-intubation. After that we had another family meeting and we were told her injury was too severe, and that she would die before she reached 6 months old. We decided to bring her home and spend every moment we could just loving her.
When your baby is dying it isn’t like the movies. It isn’t quiet, it isn’t peaceful. We watched her constantly struggle to breathe, her stomach and throat would retract deeply, her eyes would get wide with fear, and we were unable to do anything. Most of the time we held her upside down across our legs so she could breathe better. We couldn’t even snuggle her. As one resident neurologist told us she was ‘drowning slowly in her own spit.’ Josh didn’t have any leave left and had to return to work, and I was home alone trying to ‘keep the kids alive.’ One night, we were watching TV and Kaia looked at me and started crying. She had never cried before. Over several days her cry got louder and stronger, and she started being more alert and curious. We met with her pulmologist who told us she no longer required hospice! We were shocked and overjoyed. The next day we went with family to a beach to celebrate and it felt like the fog we had been living in was gone. Then, that night she aspirated and was readmitted to the hospital. Our life over the next few months was a roller coaster, and it still is.
Black women in America are 4x more likely to die during childbirth. I was almost a part of that statistic. What happened to us should not have happened. So much was stolen from us on her birthday, a day that should be full of life and laughter. The life she should have, stolen. Our sense of security, stolen. My ability to have more children, stolen. A carefree household, stolen. Her health, stolen. Her abilities, stolen. The list goes on. The rage and trauma from that day will stay with me forever, will stay with Kaia forever, with Jensen, with Josh. It has altered every aspect of our lives. But the one thing that can never be altered, can never be stolen, can never die is love. Love transcends death. Kaia and I have a bond that is unbreakable. She grew inside me, we battled together, we died together, we survived together, and today, we laugh together.
It has been a challenging journey of learning that grief and joy can inhabit the same space and both feelings are true. I treasure every moment with her, and while I grieve the losses of what she cannot do, I understand more fully the value of her preciousness and personhood, just for being her. Society views disabled people as less than and disposable, a truth which has been glaringly brought to light with the current pandemic. I have gained so much wisdom from talking to disabled adults. I have realized my hope for Kaia is still the same hope I had for her before she was born. I want her to be loved for who she is. Love and joy are not contingent upon physical abilities or skill. Physical ability does not mean strength, needing assistance does not mean weakness. I hope Kaia always knows she does not have to ‘overcome’ her disability or ‘inspire’ people to have value. I hope one day the world will see Kaia as I do, a strong and beautiful girl who loves hard.”
This story was submitted to Love What Matters by Mila Highfield. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more inspiring stories about NICU survivors here:
Do you know someone who could benefit from this story? Please SHARE on Facebook and Instagram to let them know a community of support is available.