Carleigh's Story

This is the story of my precious daughter, Carleigh McKenna, who was diagnosed with anencephaly in utero on December 15, 2008 and born still on March 28, 2009.

Before Carleigh was conceived, I came across stories of families who had received a fatal prenatal diagnosis and chose to carry to term. I poured over these stories. I read more about their diagnoses. I just felt drawn to them. I would’ve told you then that nothing like that would ever happen to me. Stuff like that always happens to other people. Boy, was I wrong.

On August 10, 2008 I found out I was pregnant and my husband and I were so excited. I called our doctor and set up my first appointment. An ultrasound was ordered to check dates and it showed my baby was measuring 6 weeks when the measurement should have been 7 weeks. We didn't really think much of it so we changed my due date from April 17th to April 24th.

My doctor offered me the extra testing but I declined them all. The tests would've shown that something was wrong, but I felt no need to get them as it wouldn't change anything and I wanted to save us from having to pay for the tests. I was positive that they would come back normal

The time came for my midway ultrasound. I was 22 weeks along and totally oblivious. I remember my diagnosis day very clearly. My ultrasound was scheduled for 1 pm, right before my shift ended at work. My best friend, Lindsey, went back to the room with me like she always does. Things appeared to go normally during the scan but looking back I realize that things were a little off. I finished my shift, picked up my daughter from the sitter, and went home assuming everything was perfect.

I had just walked in the door at home when the phone rang. It was my doctor's office. My doctor said there was something concerning on the ultrasound and that she needed me to come into the office as soon as possible. I knew immediately that it wasn't good. It's never good to get a call like that. I started going over in my head everything that could be wrong. I called my husband, Anthony, to tell him and so that he could leave work to meet me at the office. I got a few things around and left for the hospital where the office was at. I got there before Anthony and with time to spare I decided to look up my ultrasound report in the department I work in. I skimmed the report until I saw the word 'anencephalic'. I knew immediately what it meant...for me...my family...my baby. I didn't want it to be true.

One of my coworkers was still there finishing up his shift. He saw that I was upset and asked what was wrong. I said, "My baby doesn't have a brain." I paused before I said, "I can't handle this." Then I walked out the door. The shock and devastation of it all was too much to handle. I didn't even cry.

I left and went to meet Anthony. I didn't tell him what I knew but wanted to wait in case there was a small chance that what I had read was wrong (even though I knew it wasn't). We waited in the office until they took us back into a room and we waited some more. I think they waited until all the patients were out of the office. That was probably a good thing. Who wants to see someone else's dreams crushed in an instant?

My doctor soon confirmed my worst fear. Our daughter Carleigh had anencephaly and she would not live. This was when I finally cried. Anthony still had no clue what it meant. I couldn't tell him so I let our doctor do it. It was devastating to find out we wouldn't be able to keep our baby once she was born. I knew without a doubt in my mind that I would carry Carleigh to term. I had made my decision before this moment. I couldn't fathom ending her life. I wanted time with my daughter.

We met with the radiologist (who I also work with) and went over the scan. I made arrangements to be off work the rest of the week. I called my best friend to come drive me home since Anthony and I drove separately. I didn't think I could do it myself. Then we called our parents to let them know. I was still in shock of it all at this point. How could this be really happening?

The next few days were a blur of tears and me looking up as much as I possibly could about anencephaly. I already knew a little about it but I needed to know everything about this condition that would steal my daughter from me. My mom came and stayed with us until we left for Hawaii just 4 days after the diagnosis. It was a trip we had been planning for 3 years. I resolved to enjoy this vacation and not to worry about anything until we got back from our trip. That trip was exactly what I needed. I don't think it was coincidence that we got the diagnosis right before our trip. I came back feeling more confident and with a better outlook on our journey ahead.

We started planning for the future not long after we got back from our trip. This is when I began Carleigh's blog. I needed a space to keep family and friends updated and also a way to document our journey. I figured maybe one day it would help someone else like reading stories like mine helped me. We met with a funeral director and began making pre-arrangements. It was very difficult to plan for such things while Carleigh was still alive in me. Often she would kick and wiggle while we sat at the funeral home picking stuff out like her casket and her headstone. I tried to make everything as perfect as possible since this was the only thing we could really do for her.

I created a birth plan for when Carleigh would be born. We wanted to be prepared for any possible outcome. One of the things Anthony and I did was participate in a research study for anencephaly by Duke to help find out why this happens and to possibly find some prevention or cure. We also wanted to make memories so we got maternity photos, had a 3D/4D ultrasound, were thrown a prayer shower, and created a belly cast. I truly cherished every moment I carried my daughter because I didn't know how much time we would have together. Every kick and every hiccup was a blessing and something to get excited over. So many people prayed for us and sent us cards and gifts. We are so grateful for these things and for all the love we felt.

The time with our daughter on this earth was coming to an end. I decided after my last ultrasound, with advice from my radiologist, to proceed with an induction. Carleigh's growth kept falling further behind and I felt that if I continued that we risked the chance of her not being born alive. On March 27, 2009, when I was 37 weeks, I went in to the hospital to give birth to my daughter. I remember driving to the hospital very early in the morning and Carleigh had the hiccups. It would be the last time that I felt those. A small gift from my daughter.

The staff was prepared for us as I had given them our birth plan. We had a room right beside the nurse's station. Our door had a picture of a leaf with a little tear on it indicating we would be suffering a loss. We were well taken care of and so were our family and friends. Pitocin was started and it was a very long day without much progress. My friend, Ashley, came around noon to take pictures for us during labor and delivery, which is something I will forever be grateful for. She captured so many beautiful moments for us.

We came to a point when I had to decide whether to stop the Pitocin and restart it the next day or have my water broken. It was such a hard decision to make. I chose for my doctor to break my water and continue on to delivery. Things picked up after that and I finally started to make progress. I got an epidural and was able to take a small nap. The last time I heard Carleigh's heart beating was around 2 am on March 28, 2009. It was around 3:30 am when I started to feel some pressure and we realized it was time for our daughter to be born. There was a flurry of activity as everyone got prepared. It was time to push. It only took a few minutes and Carleigh was born at 3:49 am. Daddy cut the cord and she was placed on my chest. She was so beautiful and I fell even more in love with her.

Immediately my nurse used her small stethoscope to check to see if her heart was beating. It wasn't. Carleigh was born still. In that moment though it didn't matter to me at all. I was just so happy to finally meet my daughter and be able to hold her in my arms. We spent time with her alone before we let anyone come back to meet her. Both Ashley and Lindsey were there the whole time taking pictures and video for us. We let our parents come back first and then everyone else. There were definitely some emotional moments.

Our nurse weighed her and she was 3 lbs 15 oz. My small little bundle! She then gave Carleigh her first and only bath and put on her little diaper while everyone watched. I got to dress her in the outfit that I had picked out for her. She looked so cute in it. We got imprints of her hands and feet in clay and also got her hand and footprints in pink ink. Everyone who came was given an opportunity to hold her if they wanted to. Our pastor came and dedicated her and we prayed. After a couple hours we had our NILMDTS photographer come and take some pictures for us. Then we were moved to our postpartum room. Our little sign on our door followed us.

Once we got settled into our room we fell asleep. Carleigh was snuggled with me in my bed. Once we woke up we spent the day just being with her and holding her. We knew we'd never get these moments back. We had visits from family and friends. I even walked the hallways with her snuggled in my arms. The funeral home wanted to take Carleigh that evening but we refused. We weren't ready to give her up yet.

The next day, March 29th, we were released from the hospital. We originally were going to have the funeral home come get her at the hospital but we changed our minds that day and wanted to take her to the funeral home ourselves. Our funeral home made all the arrangements and were so kind to us. This is when the hard moments began. I changed Carleigh's clothes and then I started crying, knowing that soon I would have to hand my precious daughter over

So I walked out of the hospital with her snuggled in her blanket. It was a cold and windy day and even though she was gone I was still trying to protect her. My nurse and I cried as we hugged and said goodbye. I climbed into our van and we left for the funeral home. Once we were there we sat on one of their couches and spend some last moments with her. The most difficult thing I've ever had to do in my entire life was hand my daughter over to the funeral director and walk away. Words fail to describe that moment. I was truly broken. My husband had to hold me up as I walked out of there sobbing.

What got me through the night was knowing I would be able to see Carleigh the next day to dress her in her burial outfit. We had her visitation and service the end of that week. It was a both beautiful celebration of her life and an emotional shipwreck. I held Carleigh for both her visitations and her service. I needed to physically hold her while I still could. We shared a slideshow of pictures during her service from the moments we had with her and we had some very touching things shared by those who loved us. We had Ashley take photos of the service.

The moment came when I had finally had to put my daughter in her casket. It was difficult to do. I would have rather run out of the church and never looked back, but it had to be done. Anthony and I gave her our last kisses and I laid her in the casket and covered her up with a blanket. I closed the casket, sealed it, and we walked away. Everyone gathered at the cemetery for a few words. We didn't stay to watch her be put in the ground. We went back to our church for a dinner and then it was all over.

And now here we are trying to live this life without our daughter and finding joy again. I miss my daughter very much and wish she was still here with me, but I know she is happy in Heaven. I look forward to the day that I can see her again. That is the day I will never have to let her go.

19 comments:

Virginia's Mommy said...

Carleigh's story is so beautiful. I think that it is so touching to see how each family that suffers the loss of their baby is able to minister to other families even in their darkest hours. As moms we do the best that we can to treasure each moment with our little girls while they are inside of us and after they are delivered. This experience too has helped me to learn to treasure each moment with people even though I sometimes forget to do that.

HomeschoolMama said...

My eyes are filled with tears of sadness and tears of joy. What a beautiful story and what a beautiful little girl. I have stumbled upon some truly remarkable stories, one of which led me to yours, and I am drawn to them. I am a mother of six children, one born to heaven on May 10, 2006 early in pregnancy. I don't really know why I am so drawn to your story and others like it except that our family's life has been forever changed by a child who regressed after a vaccine (his first and only since he was 6 months old). We live day by day. We are different from the people around us because of what we do for this child and for all of our children (who are all allergic to nearly everything). Our journey is so very different from yours, but your story encourages me. Thank you for sharing.

Jewel said...

Thank you for sharing your special and moving story with us.

Gmama Jane said...

Carleigh's story will change lives and hopefully be used for God's Glory. You are such a brave, courageous, and wise young woman. I found your blog from my daughter mary Ellen who happens to be a NILMDTS photographer as well as the grandmother to James born premature in Oct. 2007 and later diagnosed with CP.
Blessings
Gmama Jane

AHB said...

Her story is beautifully written. I think handing over my daughter to the nurse for the last time was the worst moment of it all because I knew I would never see her again in this lifetime. Our daughter was born still due to Trisomy 18..I found out at my 27 week ultrasound..I am so glad you were able to spend that time with her. I do love her name..my living daughter's name is Carley..:)

Ashley said...

You are beautiful; and she is beautiful; and your story is beautiful. I love this. Thank you for sharing.

Kristin said...

Dear Holly,
I stumbled on your blog and need you to know that you are one of the strongest women I know. Your words, emotion and spirit are so raw and beautiful. I could only imagine how many people you have touched, by sharing your story. My daughter is suffering from a disease that majority of the children born with, are born still. I tremble in fear for when we may have "our day."
I found comfort in your story by the way you describe how you KNOW you will see her again and never let her go. How you KNOW she is in a better place and happy every single second. I feel such sorrow for your pain and loss and such joy that you have the knowledge that your family will be together again. I will pray for you and yours. You should smile to know that you have just touched one more soul.
Kristin
Henderson, Nevada

Shaina N said...

I sobbed while I read this. Such a beautifully tragic story. Your way with words captures your love of your daughter perfectly, and expresses the pain and sorrow as only those who have felt it can know.

I'm praying for your sweet family, and the ministry you're doing by telling your story.

alane said...

Thank you for sharing precious Carleigh's story. I sit here with tears running down my cheeks and really no words...I love the part where you said "I miss my daughter very much and wish she was still here with me, but I find that I can't be sad that she is in Heaven. Heaven is the best place she can be. She will never experience sorrow or pain-only happiness." Oh, what a glorious day it will be, when Jesus comes again!

Janara said...

lindo o amor que voce tem por sua filha, tambem perdi minha filha, a dor é terrivel...temos que ser fortes, um abraco

Maria said...

thank you for sharing. hugs
Maria
xxxxx

Cameron said...

Holly and Anthony,
My wife, Emily, and I are 19 weeks along with our first baby. We found out on Tuesday, Oct. 4th, that it's a girl and named her Caroline Grace. On Wednesday, we received a similar phone call like you. Then, on Thursday, it was confirmed that our baby Caroline has anencephaly. We have decided to carry her full term and find comfort in your story/blogs. Thank you for sharing. May God bless you and keep you.

In Christ,
Cameron and Emily

Holly said...

Thank you to everyone who has left comments and have been touched by our story and by our Carleigh. Your words are validation that her life has impact. ♥

Cameron and Emily,
I don't know if you will see this and I don't have a way to contact you but I'm so sorry for the diagnosis you have received. I know that Caroline will be (and already is) a blessing to you. This road isn't always easy but it is always worth it. I have never met a person who has regretted carrying their baby to term. There are several yahoo support groups and some on FB for anencephaly. You can email me at caring4carleigh@yahoo.com for more info if you like. Prayers for you both.

gwen diaz said...

Holly,
Your story (and your words to Jonny's song 'More Beautiful You') have touched my heart. God has given me the privilege to minister to many young moms through MOPS, and I know I will be sharing your story with them. It is filled with such love and hope and encouragement and joy!! I'm so glad God led me to read it. Warmly in His love, Gwen Diaz (Jonny's mom)

Jessica said...

Hello, I just read this post and was so very touched. I found your blog from Stirrup Queens blog roll. I am so truly sorry for your loss. I know this will sound strange, but what a blessing it was to you to have that time with her. I lost my daughter Emily so suddenly and within a matter of a few hours she was gone, without a hint of anything being wrong. I wish I had those months and that time to spend cherishing all the hiccups and kicks. Carleigh's story is so beautiful and we as mothers love our daughters so fiercly, even before they are born. Thank you for sharing your story.

BlogToHeal said...

I found your blog via Faces of Loss; I am so very sorry. I lost my son this May and I still don't know what to say to another angel mom.
I think it's nice you were able to get pictures and imprints. That really helps to have something that your baby touched and is a part of them. I wish I would have done that but Corbin's passing was a surprise.
Sending prayers and love to you.

TheSmallThings said...

Your story is so touching. Thank you for sharing! My son was just diagnosed with the 12 week ultrasound. Totally unexpected and I am terrified.

Elizabeth Tellez said...

I work on a Post-partum unit and I came across your blog as those who lose their newborns are near and dear to my heart. I have never personally gone through a lost but, I have cared for patients who have. Your birth story is beautiful and my heart goes out to you and what you have been through. It's amazing to see your strength and love for Carleigh. My friend lost her two year old son he had Down Syndrome and died unexpectedly, I just remember her sitting on the couch at the funeral home holding her sweet Benjamin until they took him away from her. I will forever have that image in my mind and it reminds me everyday of how hard it is to let your children go. I hope she is dancing and laughing with the angels in heaven. You are an amazing women and I pray the days ahead become easier.

Tigeh said...

Just wanted to thank you for posting. My wife and I lost our beloved son Louis late in the second trimester from VATER abnormalities, and we'll never be the same. We're on our 5th IVF cycle after 2 miscarriages and a chemical pregnancy, and my wife is 4 weeks pregnant. I live each moment in memory, expectation, hope and fear.

Yet sufficient is the Lord in all things, somehow.

1 Cor 12:9 "My grace is sufficient for you, for my power is made perfect in weakness"

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