Autumn Elise

Diagnosis: Severe Ventriculomegaly & Hydrocephalus

By Autumn Elise's Mommy

I found out I was pregnant on April 7th, 6 weeks into my pregnancy. My husband and I planned to start trying to have children in a couple of years, but, God had other plans for us, and our beautiful angel, Autumn Elise, came early. I was very happy to be pregnant and always felt that Autumn was meant to be. I also told people that she was the best birthday present I have ever received since I found out I was pregnant 10 days after my birthday.

My pregnancy was relatively uneventful with my worst pregnancy symptom being heartburn, so, it was enjoyable for me to be pregnant. I really enjoyed taking walks every day with Autumn and going to the prenatal yoga class we took once a week. I also really enjoyed feeling her movement. I felt her move for the first time when I was four months pregnant while I was in the shower. It felt like a fast flutter and I wasn't convinced she had moved until I started feeling the sensation more and more. Her kicks, which came two weeks later, made my husband and I laugh and smile over and over again. I tried to do everything right during my pregnancy to ensure that my daughter was the healthiest that she could be. I ate right, did mild exercise, avoided alcohol, drugs, and caffeine, and was signed up in various classes including Bradley as my husband and I wanted to do natural childbirth, so our baby wouldn't be exposed to any drugs during labor and delivery.

We wanted the best for Autumn and it seemed like we were making the right choices for her as all of my tests were coming back 100% normal. My ultrasounds showed that she was growing as she should be, her heart was strong, and everything else appeared normal. We found out she was a girl at my five month ultrasound and were both so happy. Going for ultrasounds was one of my favorite parts of my pregnancy since it gave us a chance to check in with Autumn and breathe a sigh of relief when we heard everything was okay. Plus, our baby seemed to go out of her way to entertain us during ultrasounds. We watched her flip, stretch, yawn, wave, and scratch her head. She was such a fun baby.

At my five month ultrasound, although everything looked great, we were told that since I had hyperthyroidism, we should come in monthly until my due date, so, the doctors could monitor Autumn's weight gain, heart rate, and thyroid gland. I was happy to have additional opportunities to check in with her.

When I went in for my six month ultrasound, it was the first time I went to one of my doctor's appointments alone. My husband had started a new job and couldn't request time off. I wasn't worried though because every thing had been great up to that point, so I walked into my ultrasound appointment with a smile. I couldn't wait to see Autumn and get more pictures of her to bring home.

At the doctor's office, the technician did my ultrasound first and acted like every thing was completely normal. She pointed out Autumn's ear, asked if I knew her sex, and talked about how active she was. She gave me the pictures I was waiting for and told me that she would go and get the doctor. I wasn't worried because even at my five month ultrasound where things looked great, the doctor came in after the technician to repeat the ultrasound. I didn't start getting worried until I realized how long it was taking the doctor to come in. She didn't come in until a half hour later.

When she came in, she told me that the technician thought that she noticed an abnormality on Autumn's ultrasound, but I shouldn't worry. She also said that she needed to double check the ultrasound to confirm whether there was an abnormality present. She didn't say another word to me until she was done. I was so scared. I didn't understand how something could go wrong after every thing had been so perfect up to that point. When the doctor was done, she told me that Autumn had a brain hemorrhage that was causing her left lateral ventricle to dilate to 1.5 cm and was displacing the mid-line of her brain. She also told me that there was evidence of a stroke having occurred at some point.

She said that our baby would have both mental and physical disabilities and that she couldn't say how severe they would be. She told me that my options were to terminate the pregnancy, deliver early or to carry to term. She recommended against delivering early because it would add the risk of prematurity to all the other things that had already happened to Autumn and it would be the most risky option for me. If we carried to term, we knew that our baby would be born with mental and physical disabilities and that she would have to undergo a lot of tests and surgeries after she was born.

I was so shocked. I didn't know what to say. I wanted to talk to my husband or my mom so badly so that I didn't have to bear the burden of such horrible news alone. The doctor didn't want me to go home alone, but I told her I was okay to drive. She also asked me to come back the next day with my husband, so that she could draw blood to test for common pregnancy infections and for Neonatal Alloimmune Thrombocytopenia. All of the tests came back normal.

She didn't recommend going in for an amniocentesis because she felt that what was happening with Autumn wasn't genetic.  She said this because all of my genetic tests done during the first trimester came back normal, there were no other abnormalities and that Autumn's problem was acute. I was hysterical when I left the doctor's office and cried all the way home.

The next day my husband and I and Autumn's three grandmas went back to the doctor's office. We asked the doctor if the other doctor on staff could do another ultrasound, so that we could have a second opinion. The second doctor confirmed every thing the first doctor told us. The first doctor who was also present for the ultrasound thought things had gotten worse from the day before. Both doctors said that they thought things would be very bad for our baby after birth.

We went home in shock with our hearts broken and our heads trying to process what the doctors had told us. At that point, pregnancy termination was the least appealing option to me, but I felt that every one else was leaning in that direction. I refused to give up on my baby without getting more information. I tried to remain optimistic and prayed constantly that she would heal and that we could go on with our pregnancy as we had been.

The week was horrible. It was constant doctors appointments and trying to make more doctors appointments. When we weren't doing that, we talked constantly about what option we were going to choose and changed our minds constantly about what we thought was best for our baby. We decided that we should see another doctor from another hospital for a third opinion ultrasound.

The following week we went in for the third opinion ultrasound and were actually given some hopeful news. We were told that the left lateral ventricle had gone down in size from 1.5cm to 1.1cm, that the midline structures of the brain looked normal, and that there was a 90% chance our baby would be normal if things didn't get worse than they currently were. The doctor also said that she did not want to discuss pregnancy termination until she had more information. She wanted me to go in for an MRI and set up the appointment for the following week. That day, my husband and I felt that we could breathe again. We felt that all of our praying had paid off and that we were given the go ahead to continue our pregnancy. I even thought about registering for baby stuff.

I had a good feeling about the MRI. I spent countless hours before the MRI doing research on left lateral ventriculomegaly and hydrocephalus and read that if the ventriculomegaly is unilateral and non-progressive, a baby's long term outcome is good. But, at the same time, in the back of my mind, I wondered how our baby would be affected by the hemorrhage and stroke that had already occurred. I kept wondering how Autumn was doing during the MRI as it was very loud and I was scared. I kept my eyes closed the whole time and had to keep reminding myself that this test would give us the most accurate information about what was going on in our baby's brain.

We spoke with a radiologist and neurosurgeon after the MRI and were given the worst news imaginable. Autumn's left lateral ventricle had increased in size to 2.0cm, the hemorrhage was ongoing, the midline of the brain was being displaced again, there was evidence of one to two strokes having occurred, and a blood clot in the right lateral ventricle indicating that a hemorrhage had occurred there at some point too.

We were also told that the reason Autumn's left lateral ventricle was measured smaller at my last ultrasound was probably because the hemorrhage was skewing the measurement. We were also told that the doctors had never seen anything like this before and that they thought things would be very bad for our baby after she was born.

We met with an OBGYN after talking with the MRI doctors to discuss options. She also told us that the evidence supported that things would be very bad for our baby if she was born. It was during that conversation that I was 100% sure that pregnancy termination was the only option that would ensure that our baby would never suffer or feel pain. The following day, my regular OBGYN also said that he thought our baby would suffer if she was born. I made the appointment for pregnancy termination after that. We had to go out of state for the procedure since I was 28 weeks pregnant and past the deadline for our state. I honestly don't know how we had the strength to get on the plane, but, somehow we did.

Autumn moved the most she ever had the day before we said goodbye to her. As hard as that was for me, I tried to enjoy every last moment I had with her. My husband and I touched my belly every time she moved. I wonder if she knew that it was our last day together or if she was saying thank you for the decision that we made; it was the most agonizing decision we have ever had to make and was 100% in her best interest. The two most difficult things for me were walking into the clinic on the first day, that was the day we said goodbye to Autumn and the morning after, I gave birth to her.

It was like my heart was yearning and calling out to her that morning. It felt like a piece of my heart was missing and that feeling didn't go away until I held her later that day when we went to meet her for the first time. As wonderful as it was to hold her, it was hard to see her because she looked like a sick baby. Things that we are glad we did are: we took pictures of her, we got her hand-prints and footprints, we brought clothes for her to wear, we brought a toy and blanket for her, and a picture of us for her. We had her baptized at the funeral home by an ordained minister and arranged to visit with her at the funeral home where I got to hold her for close to an hour. We had her cremated. We had our wedding rings engraved with her name and birth date. We have a little altar set up for her in her bedroom where her ultrasound pictures and other remembrances are displayed. We will have a memorial service for her.

Even though things turned out so badly for Autumn, me, and my husband, if I had the choice to do it over again, I would. Being Autumn's mom and carrying her for 7 months were two experiences that I will forever cherish. It was a miracle and gift from God to be pregnant with her, to give birth to her, and to feel the bond I felt with her before and after giving birth to her. I miss every thing about our little baby. She was beautiful in every way and touched so many lives while she was here. She brought our families together in love, care, and concern for her, me, and my husband and she gave my husband and me the final push towards marriage. We got married on September 4th and were so happy Autumn was there.

She taught us so many things like how rewarding and difficult parenting can be, the meaning of true love and true heartbreak, how important it is to have hopes and dreams, how quickly life can change and fall out of one's control, and how important it is to live every one of life's moments like it is your last. I look forward to the day we will be a family in heaven again and I promise her that I will do every thing in my power to try to feel better because I know she wants me and her dad to be happy again. I tell her every day that I would do anything to have her back happy and healthy again and that I am so sorry for how things turned out for her and for us.


Mothers tell their stories...

I told her how sorry I was and that I loved her and did not want her to suffer. I would rather suffer every day for the rest of my life than to allow her to suffer one moment in life.

~Mom of an Angel

Everything was going great. As already having two "normal" pregnancies under my belt, I felt confident. I knew there was always that chance of hearing bad news but I said "no, not me, not our baby."

We felt that if our daughter had been in a car accident and was on life support with the same internal injuries, we would not keep her on life support and let her suffer. This child deserved the same dignity."

~ A grieving mom

I initially thought I would "be brave" and continue my pregnancy. But I came to realize that ultimately it wasn't about how strong I could be, how deeply I wanted this baby or what important lessons he could teach me. It was about what he would experience in his short life. Given his diagnosis, he would have known only suffering. As his mother, I couldn't allow that to happen.

~ A mother at peace

It was our ignorance for believing that all pregnancies led to a healthy baby. It was my arrogance for believing that since I had the best medical care, took prenatal vitamins even before and during my pregnancy, never took drugs, never smoked cigarettes and drank about half a glass of wine a year, that our baby would be safe.

~A bereaved mother

A mother will stop at nothing, including her own hurt, both mentally and physically, to protect her child.

~Brokenhearted Mother