Lia's Story, by her mama

Post by Mellisa Higgins.

In July of 2007 I was 5 months pregnant and excited to go to my ultrasound. This was an unexpected and not entirely wanted pregnancy but I knew that it happened for a reason. My twin sister, my mom and my dad met me at my appointment and we all went in together. The technician asked me if I wanted to know the sex of the baby and of course I said yes! When she told me it was a girl, everything suddenly felt so real and I knew that this little girl would be the love of my life. After a few more minutes, the technician abruptly left and said she would be right back. I knew something was wrong.

She came back with a male doctor and he looked at the ultrasounds without saying a single word. After what felt like forever but was probably about 2 minutes, he said "I have terrible news". My heart dropped. I was just accepting that I was going to be a mommy and I was excited about it for the first time. The doctor left and came back with a post it note with a word written down on it. He said that my baby had Hydranencephaly, a rare neurological disorder where most of the brain is absent and replaced with cerebrospinal fluid. He said that she would not survive past birth. Since I was already 5 months along and live in the state of New York, he said it was too late for an abortion but that I could go to a place in Kansas. I remember my mom later saying that all she could think of was The Wizard of Oz, that we weren't in Kansas anymore.


The doctor said that if I decided to carry the baby, there was a 50% chance that her head would grow so large that a c section would be necessary and that would only be after they stuck a needle in her head before I gave birth to drain the fluid. I was devastated. I asked why it happened and he said that it is one of those rare things that happened and no one knows why. My family and I were all in tears and I called into work for the next few days and spent some time at my mom's house. I researched Hydranencephaly every minute of every day. I read horror stories but I also read stories from real families about hope and life. I decided that there was no way that I could give up on my baby. She was moving around like crazy and if she was still alive, I wasn't going to do anything to take that life from her.

The rest of the pregnancy was filled with emotions ranging from fear to anger to joy every time I felt her hiccups. I cried a lot but I knew that in the end, I would hold my baby in my arms no matter what. I decided to name her Lia. There were no baby showers, no baby things bought. I went to 4 different doctors, one of which was in a center for pediatric neurology. They all told me the same thing, that Lia would not survive after birth because my body was what was keeping her alive. The neurology department wrote me a list of the ways that she was going to die. I still have that list.

On November 7th of 2007, I started having contractions in the early morning. I called my older sister and she started to make the 5 hour drive to be with me. My mom, dad, twin sister and brothers in law all came. I went to the hospital at 5th and was admitted. A previous ultrasound showed that her head had not grown any bigger than normal so I was OK to have a vaginal birth. In the delivery room, my family kept me laughing and smiling and never talked about Lia's fate. I started pushing at 5 am on November 8th. Lia's head was turned to the side and she was "sunny side up", so she didn't make it easy for me! Finally the doctors had to use suctioning to help her out and at 8:02 am on November 8th, 2007, Lia Astrid was born at 8 pounds 8.5 ounces.

20 seconds after she was born, she let out the loudest, most heart melting cry that any of us had ever heard. My entire family came in to see her, aunts and uncles, grandparents and sisters and parents. Everyone wanted to see her. Everyone was waiting for what the doctors had told me would happen. A priest came In before I could even hold her and baptized her. Finally, Lia was placed in my arms and I got to look at the most beautiful baby girl I have ever seen. The nurses and doctors let her stay right in the bed with me and only took her for her first shots and to clean her up.

Then something amazing happened. She didn't die. I felt like I was constantly holding my breath and waiting for something to happen but it didn't. I had her on a Thursday. On Saturday, they said we could go home. She wasn't eating nearly enough but the doctors thought I would like to spend her days with her at home. My family rushed out to buy clothes, a bassinet, and everything else you need for a baby that I didn't have. The hospital sent me home with diapers, wipes and formula that would last months. A hospice nurse met us at my house. The first night at home was scary but we made it through it. The next day, the home nurse asked if I had thought about a feeding tube. Back to the hospital we went to get Lia an NG tube.

Six weeks later, Lia was eating from a bottle on her own. She had lot's of medical issues and was in and out of the hospital several times. But she lived. She could eat, see, hear, all the things the doctors said she would never be able to do. Of course she was very medically fragile but she was the love of my life and her smile could break hearts.

Lia passed away 28 days before her second birthday. She had a massive seizure. I lost a part of my heart that day, but I am forever grateful that for almost 2 years, Lia was my everything. If I had gone to Kansas, I would have never learned what true love is and what it means to love someone so much that you would sacrifice everything for them.

Lia would have been 6 on Friday, November 8, 2013 . As I do every year, I will celebrate the life of someone who changed everyone's life who met her.