Pregnant and Blindsided

I was pregnant and happy and felt on top of the world. It wasn't until a routine ultrasound at 21 weeks that I was blindsided by the news: there was something wrong with my baby's brain.
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I wrote the following story one month before I delivered my second child.

The first five months of my pregnancy, I felt untouchable. I loved being pregnant, and I was overwhelmingly happy. I had begged my husband every day for seven years to have another child, and he had finally relented. I was pregnant and happy and felt on top of the world. It wasn't until a routine ultrasound at 21 weeks that I was blindsided by the news: there was something wrong with my baby's brain. I had gone alone to that ultrasound appointment. I didn't want my husband to fight the Houston traffic, pay for parking, and have to take off from work. So, I left that morning reassuring him that I would bring him home some pictures, thinking it would be an uneventful appointment.

As a labor and delivery nurse, I know there are many things that can go wrong in the prenatal period and during delivery. I just never thought anything would happen to me or my baby. After all, people have babies all the time! As I sat there in the ultrasound room that day, I tried not to cry hysterically. I wanted the doctor to continue to scan me, hoping he would say he had made a mistake. But as he patted my arm and told me that he was so sorry, I couldn't help it, I cried uncontrollably. I left that appointment with so many unanswered questions and so uncertain of what the next day would bring.

After a fetal MRI, I was told that my baby had a brain bleed in his cerebellum. The doctor's told me it was very uncommon to see brain bleeds confined to this area of the brain during the prenatal period, and that there were only a few documented cases. No one could give me any answers as to why it had happened, what the effects would be, or what I should expect. The other babies from the three documented cases had not survived; they had all had died from subsequent issues related to their bleeds. I wanted to tell every single person I saw what had happened. I wanted everyone to know how unfair I thought it was. My husband and I talked about what we should do, who would look after the baby if something happened to us, and if it was fair to our 7-year old daughter to ask her later in her life to look after her brother if he had a severe disability. I cried all the time, my husband said even in my sleep.

I wanted to share my story because I walk around Texas Children's Hospital Pavilion for Women and I'm constantly surrounded by pregnant women. Even though I know that all of the physicians, midwives, and nurses here are amazing, and that these providers do extraordinary things, it had never really occurred to me that some of the women I see in the cafeteria, or the elevator, or walking the hallways may have also had to cope with unexpected news. I now know that many of these women may portray a brave face, and maybe they have accepted or learned to cope with any news they were given. But I know that any unexpected news is hard to handle, especially when you get pregnant and assume that you will have an uneventful pregnancy.

In the last three months, my baby's prognosis has improved. He is growing and hasn't developed any additional complications related to his bleed. His bleed is resolving, and although he has lost brain tissue in the area of his brain bleed, all of my physicians are very optimistic. The hardest part for our family has been the uncertainty. Because there isn't much data to go on, we have no idea what to expect. He could present as a completely healthy child, and we'll all wonder what all the fuss was about (wouldn't that be great?!?) or he could have motor or cognitive delays. The stem of all of our worry has simply been the uncertainty, the no guarantees, and the fear of the unknown.

I have no idea what will happen when I deliver, if my baby will have problems, or if this will happen again to him later in his life. But I know that I love him and that I wished for him and that I waited for him for so long. And I find comfort knowing that I'm going to deliver at one of the greatest hospitals, surrounded by the best physicians, midwives, nurses, and other healthcare providers. So for anyone out there that is facing uncertainty, or the unexpected, know that you are not alone. I may be standing next to you the elevator or walking by you in the hallways. And if I have learned anything through this process, it is this: You will have good days, and you will have bad days, and the only wish I have for you is that your good days outweigh your bad.

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