Annabelle Bauer
I don’t want to go into details about the pregnancy because it was extremely traumatic for me, but if I can give anyone strength through my family’s story than it is worth reliving.
I always wanted a large family: I love noise in the house, sticky little footprints, kids’ contagious laughter, and even the feeling of comforting those big crocodile tears. So, when we found out we were pregnant with our little girl (she’d be our fourth baby) we were so excited and immediately starting planning.
Because she was our fourth, or because she was so special, I started to feel her kicks at 16 weeks. She was an extremely active baby in the womb. And when we entered that 21-week ultrasound room, never in my naïve mind did I think anything would be out of the ordinary. After the appointment, and immediate follow up appointments, we learned about terms we never had heard before: Trisomy 13, Trisomy 18, chromosol abnormalities, “not compatible with life”, medical terminations, and, and, and…
It was the most draining weeks of my life. And the whole time, I just felt this little sweet baby kicking away in me. I couldn’t imagine how someone so active couldn’t be compatible with life. My husband and I spent the evenings praying for Down Syndrome - something I never thought I would be doing.
After the amniocentesis (which I still have to Google anytime I want to spell it), our biggest fears were confirmed: Trisomy 13. Which felt like the ‘dead end’ route. Doctors’ prognosis went from slim to the worst, with huge obsessions about her cerebellum, as the rest of her ultrasounds looked pretty good. One medical expert after another, suggested termination. But we couldn’t bring ourselves to take that route. There must be a reason for all of this, is what we told ourselves.
We switched medical teams and hospitals until we found a team that suited us. That is my biggest recommendation to all of you going through this right now. Find a team that works for you! Little Annabelle (isn’t it such a pretty name?) continued to grow and we made an appointment for induction for 37 + 5 days. It would be a Monday and the entire team of medical experts would be ready for us.
On Sunday, 37 + 4 days, Annabelle had made up her mind. She didn’t need the huff and fuss, and made her way BREACH into the world. I remember the midwife on the phone when we telephoned in to say we were on the way. She goes, ‘you can’t come in tonight! We aren’t ready till tomorrow.’ And I laughed and said, ‘well we don’t have much of a choice.’ She came out breathing on her own and rather squishy and tiny. It was love at first sight.
One week later, we were still in the NICU, and Annabelle continued to do better and better. I moved into her room and tried to hold her as much as possible. Oxygen levels were continuously steady, and our little lady loved to drink. This was a big surprise to me, as one of the doctors during the ultrasounds told me that Trisomy 13 babies have a big problem with gaining weight and eating. On day 7, she began to latch onto my breast! She couldn’t drink for long, but I was so happy.
On day 8 we had the dreaded ‘brain’ ultrasounds, where I was positive, they would tell us everything was wrong with her cerebellum. Instead, they couldn’t find a difference between her brain and a normal infant’s brain. We were ecstatic! They did find issues with her heart, which would need to be monitored, but her vitals were so good that there was no immediate concern.
One of the more sceptical doctors came in to do her discharge appointment (we were going home!). I watched over her shoulder to see the check- up. The doctor placed Annabelle on her tummy, and she immediately lifted her head up and was trying to wriggle away. For anyone unfamiliar with the NICU this was amazing to see. The doctor whispered under her breath, ‘you little wonder baby.’ And I felt a tear slide down my cheek.
And then we got to take our precious baby girl home with us! I have to include her discharge photo- she smiled as if she knew she was going home.
We got to spend two beautiful weeks at home with her- without tubes! My older children (age 2, 4, and 7 at that time) were so in love with her. And shocked by how much someone so small could eat. I got to give her a bath, baby wear her, and breastfeed. We had daily check-ins from a wonderful kind nurse. It was so surreal for me, because everything that I had read about trisomy 13 wasn’t true so far in our case. On Annabelle’s 24th day of life, I asked the nurse, “when would I notice that she is different?” She was such a normal sweet newborn. And she had the softest skin you ever touched.
On her 25th day of life everything changed abruptly. We visited the cardiologist for her check-up and it didn’t go well. Her heart was not growing evenly- meaning one side was having to work much harder than the other side. Because her vitals were so good, we agreed with the cardiologist to start medical therapy in a few weeks.
That night Annabelle went into cardiac arrest. We were able to revive her with CPR and were taken back to the hospital where we had been just hours earlier for the heart appointment. There was nothing we could do for her; we all just knew it was the end. It was so abrupt and shocking. My husband and I spent the evening holding her so tightly, she was so cute and cuddled up on me. And when dawn broke through in the morning and the birds began to fly our, little Annabelle left us. My heart broke into millions of pieces, and we suddenly understood the pain and grief of other parents which before, we could only try to understand.
My children came a few hours later to the hospital and held her and kissed her. I wanted them to be able to physically say good bye to their sister. I personally think its an important part of healing, and moreover death should not be taboo.
One week later, I burned my hand on the coffee machine and remember being so surprised that I could feel something. The first week I just was numb. The grief never goes away and it doesn’t change. But you will. I have completely evolved as a person, as a mother. Things that I used to think were important are now so silly. And I am so grateful for things that I was so ignorant to before. I opened up a studio in Annabelles name.
It’s now been one year. If I could go back in time or share any wisdom it would be to take more videos (not just photos) and enjoy every moment with her. I would do anything to relive those 25 days, but I am so grateful to have had that time with her. The pain of losing her is so hard but a life without Annabelle is unimaginable.
Selina Bauer