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Leila's Journey

Our Testimony of Trust


Leila, baby with anencephaly

After Isaiah was born the most common question after all the cooing over his cuteness, was "are you gonna try for a girl?" Mikey and I laughed each time and thought that it really was in God's hands. Our family, even though very busy, chaotic, full of surprises and mostly full of love, didn't feel full enough (I think I prayed the prayer of Jabez again and again). God did bless us again...

We actually found out I was expecting on April 18, 2008; JJ's birthday. Only four weeks along I waited impatiently to see the doctor for two weeks. That visit was the ONLY routine visit I was to have with Leila. Dr. Berchin confirmed the pregnancy and sent me on my way. He delivered Isaiah just eight months prior and thought I was a bit crazy. As I had with each of our kids, I began have problems, I begged God not to take this baby from us. I knew the heartache of miscarriage from earlier, between Aaron and Isaiah.

I went quickly to the doctor. I began to pray and told a few friends about the issues and Dee-Dee Whitely gave me a book to read immediately. Supernatural Childbirth, By Jackie Mize. Maybe with these issues, God was giving us a way out of this painful journey, or testing my FAITH and Trust in HIM. Reading this book changed my life and Leila's too. It taught me a new way to pray over each part of my body and baby. I believe God spared her from miscarriage then. I was seven weeks along. During this week, a new visitor joined us for a choir practice, I sang next to her all night and knew there was something extra special about her, I asked her name and she told me, Leila. I knew in that moment that this baby, if she were a girl would be Leila. A divine appointment for sure... Leila didn't join choir, but I still see her every once in a while.

At that appointment, the baby's heart beat was fine, but my doctor suggested I come back in a week to recheck her heart beat. The eight week recheck for this pregnancy was the moment that changed our life. Dr. Berchin did another ultrasound and found her heart beat and commented that it looked fine, and strong. Then he looked and looked some more and was very quiet. I was looking at the ultrasound picture too, since she was my sixth baby, I thought I knew what I was seeing. He couldn't get a view of her head and something was waving in the amniotic fluid. He asked me bluntly if I had heard of anencephaly. I had heard of it, known someone that carried their baby to term, knew these babies lived till birth and experienced Baby Mia Session's testimony of love. This was my first miracle of the journey. I saw God's hand immediately. I told Dr. Berchin all of that in the moment, and he knew then, he would be embarking on this journey with us. I know he disagreed with our decision to carry Leila, and he did offer the alternative. But he knew nothing would change our hearts.

Hearts... This journey is about Hearts, love, faith and trust.

By ultrasound Leila's condition of anencephaly was confirmed at 13 weeks and five days. We also found out that she was a girl. We already had her name.

It was the week of my dear friend's wedding. We told a few close people and made them all vow to keep Amber and Mark's wedding free of this burden till later. As close friends do, they kept it in their hearts and cried with us as we all celebrated Mark and Amber's wedding, joys and blessings. This was our second miracle. To be able to rejoice, during a trial, that was God! God graced us with a peace from the beginning so it wasn't hard to rejoice and have fun with our dear friends.

Leila's heart looked so strong during that ultrasound. And her body was perfect from the eyebrows down. We wondered and God answered. How that could be. Since anencephaly is a condition that causes the brain not to form. How could she be alive and perfect other than her brain and how did it all work without a brain... He answered, because I am GOD and I have fearfully and wonderfully made her. We didn't know why, but this baby was not whole, but was so strong. God knew her purpose...

We knew that day in June, that God was in control. He had a perfect plan for this baby, and He told us to carry her till her time. On the walk down the hill to the car after that appointment, Mikey and I surrendered and Gave this baby to God and let Him carry the burden and thanked Him for letting us carry her.

I read everything I could get my eyes on about anencephaly, cried my eyes out, and my heart broke every time I would think about burying my child. You see, anencephaly is incompatible with life outside the womb, so the doctors said... I read story after story, memorizing details, seeing how many times the doctors were wrong, and mostly finding out how long each baby lived after birth. I made myself crazy for a while. After learning all my mind could absorb, I stopped reading and just resolved to let Leila make her own story. I definitely slept better after that. Mikey too. He had to stop reading the beautiful and heart wrenching stories and let God take care of the details. He met with Pastor R., to help find some focus and perspective. Mikey struggled with trusting God for a miracle healing and the need to prepare final arrangements for a baby that may not live. Pastor and Mikey prayed together and agreed that God would take care of the details and he was to take care of me and enjoy the pregnancy, the time we did have with Leila. We stopped reading all those stories, regained our peace and began to pray all the time that God would heal Leila.

As time passed, I began to feel that I didn't want to make any final arrangements for this child of ours as I hadn't planned for any of our other children to die. I felt like I wasn't trusting God if I made those final plans myself. So my team of angels was assembled into this journey. I asked Moe to help me with all, information about burial, cremation, and all the final things I couldn't even bring into my mind. She humbly accepted and asked a few more ladies to assist in all those plans. Peggy, Cheryl, Moe, and Robin with the help of Pastor David and Brenda, embarked on our journey. I asked Becky early in pregnancy to accompany us to the hospital, months later and make a photo journal of Leila's birthday. I believe these were all divine appointments. I asked Peggy if she would make a dedication dress for Leila, and she did and It was breath-takingly beautiful: definitely angelic in my eyes. My dear friend Julia, affectionately known as Me-Maw, would watch the children for Leila's birth and be my confidant each step of the way. (She actually lived with us the entire week after Leila's birth and kept our kids safe and warm and full of life as we mourned)

By this time, the entire choir was fervently praying for our strength and for Leila, and as more of our Sonrise family received word of this precious baby, they began to pray with us. For a miracle... We had already experienced divine appointments, wonders and miracles. So from the start our prayers were answered.

God kept us busy all Summer. We took the kids to SeaWorld, played a the park, Mikey had hip surgery... Everything kept us busy and focused on many joys and the beauty of our children, gifts from God for sure. Then was Isaiah's first birthday.

Leila, baby with anencephaly

I went to the doctor for all my regular visits, and acted as if it were a "normal" pregnancy. It was by now. I was healthy and Leila's heart beat was always strong. I had one last ultrasound on our wedding anniversary, October 13. Our hearts knew the reality, but our hope for that total healing miracle was strong. We trusted God for this special baby's purpose in our lives. Even though the ultrasound showed no change in her brain and skull status, her body was perfect. She was swallowing fluid correctly, bladder full, kidneys working, heart... So strong. We continued to trust God, our faith strengthening each day. I picture God actually carrying us in the palm of His mighty hand as we took each step. He knew we couldn't do this with out Him, as we carried Leila, He carried us.

At this point in the journey, God laid it on my heart to find a new home for us. I hopped on Craig's list and all the real-estate places to look for a new home. I had a new mission. God was keeping me busy and focused. I looked at lots of houses, and found Pepper Drive, came and looked at it one week and didn't call back for about 10 more days. God's timing is perfect. Mikey didn't think it was a good time to move, with Leila coming and all, but God really worked fast on this one. I met with the homes owner. As I drove up the driveway, I realized that I recognized him from church. A Sonriser! Family! Yep! I watched his grandkids in the nursery and he at least knew who Mikey was by description...

He showed me the house. Need I say more. Another divine appointment and miracle. We moved with the tireless help of the Sowers, Thanksgiving weekend. And it is such a blessing to have family as our new landlords. There are many other details about this move and home that have allowed us to feel the presence of the Holy Spirit, but I can't list all of them.

Mikey settled us in to our new home quickly. God kept him very busy with that, and we continued to carry Leila, day by day, kick by kick. She was a super mover inside me. She moved and wiggled all the time. Another miracle. She loved Patrick's voice and moved when he spoke Scripture over us many times. Leila loved Praise and Worship. She jumped and kicked and turned as we sang every week. She was connected to the Holy Spirit, I know that! She was growing, moving, hiccupping, and even dancing, and getting big in my safe, warm womb. A womb with a view. Yes! Of the FATHER.

This story seems long, but that's what a journey is. It has bumps, and beauty and IS the life of Leila. Every time I was asked how I was doing, I replied with "I just want to get thru Christmas for the kids and keep it special. Then Leila can make her entrance."

God granted me that. He answered my prayers. Mikey and I had a great Christmas with the children. So many people blessed us with gifts, for them and for us. We are so overwhelmed by everyone's generosity and love, and we can't wait to be able to give back all the love we have felt. This body of believers really understands paying it forward and joyfully gives. We are so honored and humbled to belong to such a glorious family.

I was induced on Monday December 29, without much drama. Just the regular stuff. Leila's heart beat looked great all day and in to the night. The doctor and nurse let me get my epidural early so I really had no pain all day. I rested, laughed with my angel team, prayed with Mikey and listened to Scripture and music all day. Even at 6:00 pm not much was happening. But Leila's heart still looked great on the monitor...

About 9:30 pm the doctor came in to check and see if Leila was even head down and to investigate as to why I wasn't really progressing. He decided that she was head down and broke my water. We called home and told everyone to go to bed and that we would call in the night if things started happening. Laryssa and Me-Maw were to come in the night and our friend Rusti would bring the boys up early in the morning. Both ladies spent the night at our house. The plan was set.

About 1:30 am the nurse checked and I finally made it to 7 dilation and we decided that since things were moving faster that we should call Laryssa and Me-maw to the hospital.

They came and I was pushing. Leila still had a heart beat even though it slowed dramatically every time I pushed, it came back for a while. I was ready to have her, but the doctor had to deliver another baby before me and I stopped pushing and waited for another 30 minutes. Leila's heart started slowing by then and did not really ever recover. She would move a little and had hiccups one last time about 3:00 in the morning. That was the last time I felt her move. The nurse kept trying to find her heart beat while Leila was in the birth canal, thinking maybe my pelvis was impeding the Doppler sound and that maybe she did have a heart beat then. It was comforting at the time, but I think she was gone to heaven about 3:15 in the morning...

Finally my doctor, who had now delivered three babies that night, came in and I started pushing for real, and pushing and pushing... Leila was stuck in my pelvis. Dr. B. said that he had to "manipulate her shoulder" to get her out. He dislocated her shoulder and arm, pulled it out from under her inside me. He worked hard trying to turn and dislodge her. (Remember I think she had passed away earlier and I thank God she didn't have to feel any of that).

She was born Tuesday, December 30, 2008 4:21 in the morning. She didn't try to breathe, she was so still. They called her time of death at the same time as her birth. I know she was with the FATHER for the really painful part, and I was comforted. Laryssa and Me-maw finally got to come in. The doctor was silent and the room was silent. It was deafening!!!

Then the sobs started and heart wrenching reality that our baby was dead. Her head had no skin on top or skull, and her brain, partially developed was just an open hole. It was jolting to see and beautiful at the same time. She was perfect from the eyebrows down.

Leila hung in there so well. Letting her little heart beat so strong for so long. She was active till the end and those hiccups are forever my comfort.

We held her, took pictures, bathed her, loved on her, smelled her, kissed her, held her some more, warmed her little body, and clothed her in many beautiful little Pajamas. The dedication dress that Peggy handmade was too small. But we put it on her anyway. She weighed 7 pound and 4 ounces. We held her for nine hours. And we cried a lot; mostly, quiet tears ran down our faces all day.

Leila, baby with anencephaly

The boys all came up to see her about 8:00 am. She was dressed and had her beautiful hats on to hide her head from them. We took family pictures all in black shirts, took a few pictures of Leila alone, but mostly, with her in our arms. JJ did great and seemed to understand our sadness and Joy. He gently touched her face and we gave her a name sign. L-A-L-A hand spelled for Leila. He got it and kissed her face. Aaron knew that she would go to heaven, but seems to be waiting for her to come back, now that God has fixed her head. He has accepted it pretty well though. It's hard to explain forever... to a four year old. Isaiah just wanted to be held and passed around, we'll tell him the story some day. Laryssa cried with us and held her sister and needed to be hugged.

After the boys left, we made many arts and crafts with plaster and clay hand prints and feet prints and ink prints. Taking about an hour to make sure the prints did her justice and caught the beauty of her perfect body. Mikey took charge of all this time and let his quiet strength fill the air with love as he gently pressed each print and checked it for perfection.

I have left the best part of this journey for last because we didn't know Leila's full purpose until that day before she was born. Life Sharing is a group that helps with organ donation. We got to donate her strong heart valves to two other babies. Maybe to save their small lives. Leila will live on and had a God-given purpose that we didn't know about till that day. I had researched it and got no where and felt like I got blown off over and over when I told of her anencephaly. There are specific criteria for babies and what can be used. It reminds me of the story of the Sand dollars. They were washed up on the shore, dying by the thousands and a girl came by and began throwing them back as quickly as possible. Her dad mentioned that she should stop, it didn't matter, because she couldn't save them all. But she said to her daddy. "It mattered to that one."

Leila was a big girl and all the energy that didn't go into developing her brain, went to growing her body strong. Most of her 7 pound 4 ounces was all in her body, she was chunky in the thighs, just like me and Isaiah, and her toes were long like Mikey's. She had perfectly formed lips, a beautiful mouth, Mikey's nose and fingers. She was beautiful to us and God made her perfectly for His plan.

God is So Great!

We have many miracles to thank God for on this road. Everyone that was with us in the hospital, the staff and friends were hand picked by God to support us, love us, cry with us, care for us and Leila. To the best of my knowledge, all our nurses know God and two were definitely saved, one had even come to Sonrise before. The lady from Life Share was born again and shared our love of the Lord and loved us thru our sharing. Every one that came over to our home after Leila's birth blessed us and we are so grateful for everyone and love each one.

Even that Leila's heart was strong till the end is a miracle. God saved her form the pain of that horrendous birth. That one was for me too. I couldn't have known that she felt all that, it would have made the end of this journey even harder. Her face was perfect and she looked like Mikey. She would have been beautiful growing up.

We are healing. Our hearts are still so soft. I hope that feeling never goes away when thinking of our beautiful daughter, Leila. I just pray to get through each day and see God's touch in all of it. I think carrying Leila has made us better parents, loving our children more, acknowledging that we are Stewards' of their growth and that God could take them at anytime. We won't live in fear though. Just savor each moment.

We will put pictures on the wall of the family holding Leila, so the kids will remember their baby sister. And we will speak of Leila's Journey of Love. We hope that maybe someone would want to know our God, the strong loving Father that allowed us to carry Leila, as He carried us.


LeeAnne can be reached trough the webmaster


I have had a baby after Leila, named LilyAnne who was perfect and blessed us here, us since our precious Leila stayed with our Lord.



Last updated July 9, 2019