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Nathan Lukas, baby with anencephaly

After 2 boys 19 months apart, my husband and I took awhile deciding if we wanted to try for a third child. We had just sold our duplex and were looking for our "forever" home when we decided we did want another. A few months later, right after moving in to our new place, we got the positive test, our family would be complete! Life was looking so good.

At 16 weeks we opted to do the screening and it came back high for AFP, a marker for spina bifida. We had an ultrasound at 18weeks to see if it was a false positive and 30 seconds into it our lives changed with the words "I'm going to get the Dr. I don't see a skull on your baby" followed by the doctor's words "your baby has anencephaly, a condition incompatible with life."

Anencephaly is a neural tube defect where most of the brain and skull fail to form in the first few weeks after conception. It affects approximately 1 in 1000 pregnancies, with most of those terminated before 20 weeks.

Incompatible with life-but I could feel him (we found out a couple hours later we were having a boy) moving! How was this possible?

We were devastated and heartbroken. We were immediately given the option to terminate our pregnancy, but also given details about perinatal hospice.

If we are honest, we admit to briefly considering termination as a way to get the pain over with quickly. But reality is termination wouldn't have helped us avoid any pain or get over it faster. We were going to lose our son no matter what and we wanted to meet him, hold him and love him for as long as we could.

We met with some specialists and were told to anticipate his passing most likely either prior to delivery or during delivery. We were told numbers such as only 25% of anencephalic babies survive birth and even then, maybe for only a few minutes or hours.

For multiple reasons, we scheduled induction for October 1, his due date, but prayed we wouldn't need it. The night before, on his daddy's birthday, Nathan started labor on his own. After a few scary minutes when his shoulders got stuck, he came into this world very much alive at 10:29am, October 1, 2014 ready to greet us and his brothers and the waiting room full of family anxious to meet him.

Nathan Lukas, baby with anencephaly

He was so beautiful.

We had been told most babies like him were small, but he was chubby and about the same size as his older brothers had been. We were also told that these babies can't hear, feel or see, but Nathan could definitely do all of those. He flinched at loud noises, cried when the opening on his head was accidentally touched and tried to turn away from bright light. He drank some milk from a syringe, had a few dirty diapers and lived an amazing 88.5 hours.

We never thought he would come home, but he did and passed away in our arms at home.

Saying goodbye and handing his body to the funeral director were the hardest things I have ever done, but he was worth it, every second.

We know we will see him again and look forward to that day. As time passes, I miss him more but also know that each day that goes by is one day closer to seeing him again in heaven. Never have I been more grateful for the hope of heaven through Jesus.

Nathan means God's gift, and he was. He was our gift from God that taught us so much about unconditional love and the miracle of life, and he was our gift that we had to give back to God much sooner than we wanted, but we are thankful for every second that we had him here with us.



Last updated Mai 1, 2019