My name is Jaime and my husband's name is Trevor. We are raising two of our three children, Tyler who is 6 and Kayla who is 2. I had no plans on becoming pregnant again for a very long time. To our complete surprise in May 2001, we found out we were expecting bundle #3. For a few weeks complete shock and disbelief took over my body, Kayla was just turning 1. All the doubts, fears, and worries quickly lifted the day I first felt my baby move. Elation soon overwhelmed us and the whole family was anticipating our newest addition.
The pregnancy was my standard kind, a lot of morning sickness and not much weight gain, I wasn't too worried. I always felt like I was carrying a little boy, he didn't quite move too much and reminded me of my pregnancy with Tyler. My prenatal visits were routine, and we loved hearing his tiny heartbeat. Soon, plans were underway, getting the nursery ready, buying little things needed for his January 20th due date.
On Monday, November 10, 2001 our entire world was turned upside down. We were so excited that morning. I was 31 weeks along and about to see my baby by ultrasound. We had so many plans that day, nothing prepared us for what was about to happen.
While I was being prepped for the ultrasound, our technician was a very quiet man who didn't seem too thrilled to make conversation with us. Trevor and I were happily chatting away making bets about the baby's sex, never knowing our technician knew something was horribly wrong with our son. If I had brought up a question he would just tell me to be quiet and lay on my side. I found him very odd - never was I told in my previous pregnancies to turn on my side before. I had thought maybe because I was so far along for my first ultrasound, he needed good pictures and was just concentrating on his job.
We were left in the room by ourselves for an hour, thinking he was just doing his routine technician stuff. He would briefly come in and ask me strange questions, "You had a daughter here 17 months ago? In this hospital? Was she healthy?" I answered yes to all of them and then he left us again.
I had sent Trevor out a few times to see what the hold-up was, and we would come back in and tell me people were looking at all the pictures. I remember turning to him and telling him something was wrong. He would do his best to calm my fears but I just knew the technician was going to tell us something was the matter with our baby. When all of a sudden, as soon as I said this, in walked my own doctor. I looked at Trevor with worry and she looked terrified, so I knew she was going to tell me our baby was missing something like his arm or a leg. Never in my wildest imagination would it be anencephaly.
She sat down in front of us and tried to explain what anencephaly is. It's a failure of the neural tube to close in the 3rd or 4th week of conception, resulting in the absence of a major portion of the brain, skull, and scalp. As we were stunned and shocked, all I remember were the words "NOT VIABLE". I completely lost it in that room. I tried my best to compose myself in the bathroom of the u/s room. I came out and to this day will forever regret what I did next.
My doctor had proceeded to tell us there was a room upstairs to start an induction. She never asked me or had said go home, rest, make an informed decision when you are thinking clearly. I don't blame her, I had free will, but she now knows how important it is for her to tell patients they have a right to make an informed logical decision regarding inducing early or carrying to term.
Being in that kind of mental state, I ended up following her upstairs. For hours all I could do was sob, and ask as many questions I could think of. We had a wonderful support team in our local hospital, and the doctors and nurses tried their best to comfort us, and answer our questions quickly with as much ability as they could.
After 3 days of being in the hospital, having many more ultrasounds, and chemicals to induce my labor, nothing was working. So, at this point, my mind was becoming clearer and I wanted nothing more than to make this induction stop. I would talk to my little guy and I knew he wasn't ready to come out. The last ultrasound we had, he was laying across my belly in no way ready to be born.
We went home and made the definite decision to continue on with the pregnancy. Seeing the nursery for the first time was sheer agony, all the little things we had bought, all our plans for our baby were no longer. We had to try and accept what was going to happen, we were going to lose our son. We tried to make the last nine weeks of my pregnancy very normal ones. It was the holiday season and we wanted to make Christmas a very special one for our family.
I was getting big but not too uncomfortable. I never did like being at the very end stage of a pregnancy, but this time it was different. I never wanted Brandon to leave my tummy, knowing I was basically his life support. I researched as much as I could find about anencephaly and tried to make sense of what was going to happen. Babies with anencephaly are either born still, or if they survive the trauma of birth, they briefly live anywhere from minutes up to days. Some doctors will tell you that anencephalic babies do not feel anything but Brandon will dispell that myth for you.
January 12th came and contractions were coming, faint but steady at times. A very exhausting, emotional and physically long labor ensued. Brandon arrived five days before his due date, January 15, 2002, weighing in at 4lbs 13 ounces, 17 1/2 inches long. He was born with the bag of waters acting like a force for his head, I'm not sure if this played a big part in why he wasn't born still, but I will forever be grateful for my doctors. Their knowledge and willingness to learn as much as they could about this type of NTD, very well played a big part in Brandon's brief, wonderful life.
Our reaction to our son was that of complete awe. He was anencephalic and he was indeed beautiful. He had so many resemblances to our family, it was uncanny. He had my husband's thin lips, his wonderful cheeks, chin, and nose. His eyes were a bit bulgy, that is due to the orbital bones not forming correctly, but the same deep brown eyes all my children share.
Brandon was born at 12:38 am early Tuesday morning. It was such an emotional time for my husband and I. We never wanted any kind of company regarding friends or relatives, knowing Brandon's time with us would be short we felt it should be just us, bonding with him and loving our son for as much time as we could possibly get with him.
About an hour after he was born, we had a priest come in and baptize him Brandon Michael.Part Two
Being in labor is something that exhausts you physically, but when you are having to give birth to an impending dying baby, there are no words to describe what we go through emotionally. I was tired and knowing our time with Brandon was limited, I somehow found the courage and strength from God to stay awake
We held him most of the early morning hours until exhaustion set in and we tried to sleep. The lights were dim, and I had Brandon in my arms. Trevor slept on the pull out chair next to us. While my husband slept, I could not do it. I just stared at our tiny, beautiful sleeping bay in my arms, took off his blanket ad inspected every inch of him. All perfectly formed and ever so cute!! This is one of the saddest parts of this type of NTD, Brandon was perfect in every way except for the parts he needed to live a long, healthy life.
I would try to muster the courage to peek under his hat, but sadly I would get as far as the top of his eyes and could not look. I regret this now, but at the time I did not want to see my son's defect and look at what was going to make him not grow up to be his father's spitting image.
The day of the 15th we spent just like any other normal family that delivers a healthy baby, with the exception Brandon did not leave our room at all. That afternoon we gave him a bath, he never did seem to like being bathed and would cry really loudly as I tried to wash him. I sang to him, kissed, cuddled and talked to him, watched him coo and make spit bubbles. Cry again very loudly when I accidentally clipped him while trimming his long fingernails. As I would nod off while holding him, it was nice to see him fuss as I woke him up from sleep. I say nice because it disproves the textbook theory that our babies cannot feel anything. Anencephalic babies DO feel, they feel pain, pleasure, and most importantly, they feel our love.
Our children came to meet their baby brother that evening. Re-telling Tyler that his much wanted brother wasn't coming home broke our hearts all over again. He took it very heard, and to this day it is something that he still struggles with. Tyler loved holding Brandon, talking to him, and helping me care for him. Kayla was a different story, she was only 19 months old, being a typical baby herself she was a bit jealous. She never did want to kiss or hold him. She was content just staring at Brandon and trying to shove her cookies at him. We took family pictures and video of all of us, wonderful, precious moments spent being a family of five.
The night of the 15th, his temperature would go up or down and he gave us quite a scare. Luckily, we had a wonderful nursing team who took excellent care of us. Brandon never did have any seizures but he would spit up and vomit a lot. It was another long sleepless night for Trevor and I.
January 16th, 2002
This day I call "our day", it was mostly just Brandon and myself. Trevor went home in the morning to tend to our very unhappy kids, so he was back and forth the entire day. My nursing staff and doctors gave us so much privacy and respect. I will be forever grateful.
I spent the morning massaging Brandon with lotion I warmed using my heating pad. Not one single fussy cry from him, nothing but a look of contentment on his face. I found something he enjoyed and did this often. It was truly a fun day for my husband and I. We had our sad moments, those times I would get so happy over something he seemed to do, I would only remember to value and treasure the memories we were making.
He was perfect the entire evening. I had finally let exhaustion catch up to me and turned the lights out at 8 pm. I told Brandon if it was his time to go while I slept, it was alright, Mommy and Daddy loved him. Saying these words, "it was alright" to him were very difficult for me. To my delight, we both slept peacefully till 3 am.
January 17th, 2002
Brandon woke me with a little weak cry and vomit. I quickly called for my nurse who took his vitals and told me it was his time, she would call Mary, my bereavement nurse, and my husband, who I sent home at 8 pm. They both made it in record time, and Trevor and I took Brandon and curled up with him in our hospital bed, taking those final pictures and saying our heartbreaking goodbyes.
He seemed so weak and gave out short little cries from time to time, puckering his lips and spitting up. After three long hours of watching our beautiful baby boy struggle, God peacefully took him to heaven. Brandon passed away at 6 am in his daddy's arms with both of us holding his hands.
53 miraculous hours we were given with our son, time so short but so long, too. I cannot explain the gift God gave me, to make my inductions a failure and then allow me precious time. I never was a spiritual person before, but I am now.
I'm not sure how we managed to get through those next weeks and months. Somehow, I found the strength I never knew existed in me, courage to finally get out of bed and try to make a new, normal life. I joined support groups for anencephaly and have found comfort, support, and newfound friendships I will value forever.
I sincerely hope you found inspiration in Brandon's brief but joy-filled life. It has been a great source of healing to finally write it all down.Editor's note: If you benefited from reading this story, perhaps you will also be interested in The Greatest Three Days of My Life