Lucy’s Story: A Turner Syndrome Baby

Alexis WaidBlog, Prayer For Family

Turner Syndrome Baby
Alexis Waid
Follow Along

Alexis Waid

Alexis has a Master's degree from Denver Seminary and a Bachelor's degree from Colorado Christian University. She has been in professional ministry for over 15 years. She has served in ministry positions such as co-pastor, youth minister, and spiritual director.
She is a mom, wife, and passionate believer that Jesus changes everything.
Alexis Waid
Follow Along

Latest posts by Alexis Waid (see all)

June 1, 2017 is a day Aaron and I will never forget. 

It was the day of our 18-week anatomy ultrasound, a routine test to check how our unborn baby girl was coming along. 

Through another test, five weeks before, we found out we were having a little girl, who I immediately named Lucy. I had the name Lucy on my heart for nearly a decade and I couldn’t believe I was finally going to have her!

It had been quite a journey to get to Lucy.

We endured two miscarriages earlier in our marriage, one on Christmas Day of 2011 and the other seven months later on July 22, 2012. After the miscarriages, we didn’t try to have children again until 2015. It just was too hard and sad to deal with for a while. Our first two babies were such great losses and created a deficit in our heart that we had to live through for a long time. 

In 2015, I became pregnant again, and although we were incredibly concerned throughout the duration, it turned out to be a healthy experience. A beautiful baby boy, Rhett Alexander, was born on December 4, 2015, and our lives forever changed. Due to a bad reading on my final ultrasound, the decision was made to deliver Rhett via c-section. It was feared he was too big to be delivered naturally. This misreading probably saved Rhett’s life. It was later discovered that the umbilical cord was wrapped around his neck three times and the cord had knots in it. Should we have gone into natural delivery, the results could have been life-threatening. Rhett also turned out to be 9 lbs at birth, not the 11.5 lbs that had been previously expected.

Rhett was safely delivered and I became a mom to a baby born here on earth. Because I had to undergo a C-section, I was told that I would not be able to conceive again with another child until one year later, in order to allow my body to recover.

I knew without a doubt that I wanted to try one more time to have another child.

In February 2017, I found out I was pregnant again. I was thrilled, and a little scared… but mostly excited. We decided that we would do an early screening test simply to find out the gender. The screening, a simple blood test, also scanned for the major syndromes. I didn’t think much about that at the time. I just wanted to know who it was that was growing inside of me. 

Oh, how I dreamed of having a little girl – a little girl named Lucy.

In my mind, I knew she would be strong and adventurous. She would be loving and she would live up to her name which means “light.” In my mind, I knew Lucy would bring hope, truth, and love everywhere she went. I would breathe worth and value into her all of my days and equip her to be a strong woman in the Lord. 

So you will naturally understand my sheer exhilaration when I received the initial news. The prescreening showed I was having a girl! I remember opening the email with the results and scanning quickly through the results on abnormalities and syndromes, thinking, “Okay yea… what’s the gender?” I couldn’t believe it when I reached the bottom of the email and found the information I was searching for – It’s A Girl! 

I screamed out loud and started crying. I finally composed myself and thought, “I should reread the test more carefully because it does have other information.” I carefully looked through the results, which reported that Lucy didn’t have any of the major syndromes or issues. “Oh great! Nothing to worry about at all!” I thought.

I literally felt like I had won the lottery. 

I was on Cloud 9. After losing my first two pregnancies, I couldn’t believe that I was actually going to have both a marvelous little boy and my little dream Lucy. All was good, besides my on-going and horrific morning sickness, but that is to be expected!

Several weeks later, on June 1st, 2017, we went in together as a family for our 18-week ultrasound, a time where they measure most of the visible organs, bones and other functions of the baby. With our son, Rhett, this was the ultrasound that revealed that he was a boy. It’s an important test and can tell you a lot about your baby.

I wasn’t particularly concerned about the test. I mean, I’d already received the preliminary screening that showed Lucy didn’t have any of the most commonly tested for syndromes. We entered the testing facility as an entire family. My husband, Aaron, held Rhett on his lap while Rhett played quietly with a toy while the ultrasound was performed.

As the ultrasound began, the technician was friendly, pointing out various parts of the baby, such as hands and feet, on the screen. We were delighted to see our little girl in such detail and looking so much like a full-grown baby at this point, even though she was still very small.

But as the test continued, the technician became less talkative…

She became more focused on her work, barely speaking at all by the end. We were so captured by the images on the screen that we didn’t notice her increasing withdraw. Finally, she finished the scan and told us, “I’m going speak to the doctor. She’ll be with you in just a minute.”

Then the technician hurriedly ran out of the room. It took a seemingly long time for the doctor to enter. All the while we sat quietly, happy to get a glimpse of our baby and to have a more tangible understanding of the little life inside of me. 

The doctor finally entered, shook our hands sheepishly and then said words I’ll never forget, “Well…there are… findings… with the baby.”

The doctor then began speaking with words I could barely comprehend because I’d never heard many of them before. Words like hydrops, ascites, coarctation of the aorta, septated cystic hygroma. It was words that in my shock and confusion I could barely comprehend. However, these words would soon become household language for us.

Then the doctor added something else I wasn’t expecting to hear that day.

She told me that she would be remiss if she didn’t inform me of my rights to terminate the pregnancy.

You’ve GOT to be kidding me.

In a flash, our lives were thrown into a storm we didn’t know was brewing. The conclusion of this doctor, and many, many doctors we would see for months, is that it was simply impossible for Lucy to survive. She would almost certainly become a stillbirth within weeks. 

The baby girl I dreamed of for years and years was going to die and there was nothing I could do to change it. 

Again, we were told to expect a miscarriage or a stillbirth. Did you know there was a difference, I sure didn’t. A stillbirth is basically a miscarriage that happens after 20 weeks gestation. In the state of Florida, a woman can have an abortion up until the 24th week. I never remotely considered the abortion, but I did hope my daughter would make it 24 weeks, so she would be recognized as a human life in my state.

That was what hope looked like at the time. Hoping she makes it long enough to have a death certificate.

I had no hope that she would live.

I just believed that there wasn’t any hope. Nobody gave me any reason to have hope, and with my history of difficult pregnancies, “fortune” had never seemed much on my side.

With little other choices, I embraced the reality that my beloved Lucy was going to die. My grounding thought was, “At least she was created and I will spend eternity with her in heaven, where there will be no sorrow, no pain, and no death.” I continued on through the sadness with this redeeming thought. 

I didn’t even know the gender of my previous two babies I had lost to miscarriage. I never named them and had very little connection to them. I felt so thankful that at least I knew it was Lucy, a bittersweet reality. 

We continued going to the doctor every week and Lucy kept surviving, but her problems remained. Around 21 weeks we finally agreed to have an amniocentesis, which is a test that draws amniotic fluid from inside you with a huge needle. I hesitated on the test because all the doctors said there was no hope and nothing anyone could do to help Lucy. So I thought, “Why would I do this test if there is no point?” Well, finally I came around and saw the benefits of taking the test and around 23 weeks, we received the results and found out Lucy has a condition called Turner syndrome.

Turner syndrome Baby

Turner Syndrome Baby

Turner syndrome is a condition that only occurs in females, and cannot be predicted through genetics or by taking into consideration family histories. Women typically have XX chromosomes and men have XY. But, that’s not the case for females with Turner syndrome. Although there are a few variations, the typical Turner syndrome female only has one X chromosome. 

Turner syndrome is actually a common issue with prenatal babies, but unfortunately, 99% are lost to miscarriage or stillbirth. Turner syndrome usually causes an accumulation of fluid in the baby’s body (hydrops), particularly around the back of the head, neck, and back (cystic hygroma). It is often accompanied by a heart defect that causes the aorta (the big artery coming out of the heart that sends blood to the entire body) to be bottle-necked and narrow (coarctation of the aorta). 

Not every Turner syndrome baby will have each of these conditions. In fact, there are some Turner syndrome babies who have no outward symptoms and don’t discover they have Turner syndrome until they are young teenagers and when they don’t go through the typical changes one would expect of a girl that age. 

Each one of those conditions is, by itself, incredibly dangerous, and put the baby at risk of being overwhelmed by fluid and heart failure. And Lucy had not one, but THREE major symptoms. With each major symptom, her chances of stillbirth multiplied. 

Lucy had an enormous, multi-chambered pocket of fluid under the skin around her head. Her stomach was filled with fluid, her heart had a hole in it, a narrow aorta, and her blood was mixing due to one of the heart’s “doors” being flimsy or not formed at all. Based on everything that was told us by doctors, it was impossible that she could survive all of this.

When the doctor called with the amnio, she was very somber, but I was overjoyed. At least we had a diagnosis, and I knew that if she could somehow make it through all of the symptoms stacked up against her, Lucy had a real chance of growing up and having a happy, intellectual, and mostly “normal” life.

The doctor visits were quite hard, especially before we reached the 24-week mark. I was offered the choice to abort at every visit, as though I had somehow “forgotten my rights” as an American woman or something. I had a very difficult time with the constant mention of abortion, especially when it was coupled with a lack of encouragement for the decision to carry to term, regardless of what happened.

Terminating the pregnancy was not an option for me. I was not going to be the one who allowed someone to kill my baby. Even if she did die on her own, that would never be my decision. I would have no part of that talk. 

This was my Lucy and this was her life. 

When I decided to try to have another baby, months before, I said, “Okay God, here we go again. Whatever happens, I will trust in You. If this baby should die, I know that it is not the end only the beginning.” 

With every medical professional providing no hope for our daughter, we decided to make a conscious decision – a lifestyle change – to walk with our daughter in her suffering for however long or short it might be. And all evidence seemed to indicate that she would not live much longer.

This was not about me, but about this precious life.

This was Lucy’s life. Even if she never lived outside of my body – that was her life and we were going to honor and cherish it. This was the one (and practically only) thing I could do for her. 

Well, we finally made it to week 24 and we felt like we made it to a milestone. Again this was bittersweet because it only prolonged the inevitable. No medical professional believed Lucy would ever grow up, or be born alive.

The summer continued on and…so did Lucy.

We continued to have ultrasounds, and her condition remained the same, which is not a good thing for a hydropic baby. When a baby has fluid in their body, it takes up the very limited space in their body. As a result, organs have more difficulty growing and functioning properly. If Lucy were to have any chance of survival, the fluid in her body needed to dissipate. Medically speaking, that almost never happens. We needed the cystic hygroma around her head and neck to collapse. We needed her heart to correct itself, or at least hang on until it could be surgically repaired.

As the summer went on, Lucy remained alive and growing. She was tiny for her size, but eventually, I began to feel her kick and move around inside of me. It seemed like such good news, but that is actually the point where the medical predictions became the direst. Having made it well past 24 weeks, many doctors began warning us about an entirely different scenario that was much more difficult to understand than a miscarriage or stillbirth.

A different outcome began to emerge

They began preparing us for the real possibility that Lucy might survive all the way to full-term birth, but then be unable to breathe and live on her own outside of the womb because she had no lungs. 

Oh, I just couldn’t do it. No, no, no. I couldn’t possibly imagine my sweet baby overcoming so many odds, only to die immediately after being born. 

I remember wanting to vomit. Wanting to pull my skin off. Moaning the most agonizing cry of my life. Howling in despair and terror. 

My Lucy would be born to die. 

I could handle (and I use that term loosely) a miscarriage. I’ve had miscarriages before, and they are terrible, but I knew I’d make it. I could prepare for a stillbirth, with God’s help. But to see my baby alive and hold her as she died… well, I just couldn’t do that. 

This was my Hell. I just couldn’t fathom a way to face that delivery room.

But even in the midst of this living nightmare, God was speaking to my heart and leading me on a path of closeness with Him. He brought me encouragement from other Christians, and countless Christians prayed for us. Even in the midst of this torment, it was also a time of intense protection and love.  

I felt God’s love deeply and I drew very close to Him. I can’t really explain it, other than I chose to seek God every day through prayer, Scripture, worship, serving, and conversations with Aaron. I really had no choice. It was either turn to God or completely and utterly fall apart. 

Dependency on God is what enabled me to sail through the worst storm of my life.

This didn’t mean I wasn’t sad. Even Jesus was felt sadness during His life. God sheltered me in the storm. He was my refuge and I knew without a doubt He would lead me through this Hell.

He was with Jesus as He willingly walked to His death.

I knew God would be with me too if I had to walk to that delivery room. Even if the worst happened, I knew God would be there for me, just like He was for Jesus as He endured His ultimate suffering (Luke 22:39-43).

I prayed that God would equip me to face my cross, just like He did for Jesus. Luke 22:39-43, was incredibly important to me as grounding Scripture. I felt so close to Jesus in His suffering because I felt as though He understood what I faced. I prayed that God’s will be done. I prayed that I would be strengthened in His power and love as I prepared my heart and mind to say hello, and then immediately goodbye, to my precious Lucy. 

But…the worst didn’t happen, and I know that God saved Lucy’s life.

In August 2017, we found out that Lucy’s heart was healed. Actually, it was a misreading of an ultrasound. Lucy’s heart was still in serious trouble, but that misreading lead us to switch obstetrical practices and have Lucy delivered to a level 3 NICU hospital in Orlando, an hour and a half drive away.

It wasn’t until 35 weeks, only three weeks before she was born, that we finally found out that Lucy had developed lungs, something our old doctors thought she could never have. Months before, we had given Lucy a middle name, “Abella” which is old French for “breath,” because we so desperately needed her to have lungs and be able to breathe. Based on this information, only weeks before she was to enter the world, it looked like she had a chance to take that breath.

The Birth

Lucy Abella was born via C-section on October 17, 2017. We had an entire team of loving and caring doctors and medical professionals to help her take her first breath, which she did after about 30 seconds. She was born puffy due to her hydrops. There was a large amount of extra skin on her neck and back, a reminder of how much fluid once surrounded her head.

We found out the next day that her heart was in worse condition than originally expected, and would need immediate surgical attention. Lucy went to the operating table at 6 days old and had the coarctation of her aorta repaired. Now, when doctors listen to her heart, they can’t believe she had surgery because it sounds so good! 

Despite astronomically improbable odds, Lucy survived and is still doing well.  Nobody is worried about her life expectancy being shortened, and her cognition and organ function is good. One major concern for all Turner syndrome girls is height, they tend to be much shorter than they might have been normally. But Lucy is predicted to be around 5’4” despite her shortened growth.

Lucy was in the NICU for 55 days until December 11, 2017 and left the hospital with a G-tube (feeding tube) placed in her stomach due to her silently aspirating on milk. She has a laundry list of cosmetic problems and will have future surgeries, but she is doing quite well.

I actually am writing this story prior to her third surgery.

Since Lucy was breech, her hips were displaced and out of their sockets. She is now six months old, and they are able to address this issue. They are going to remove whatever is blocking her hips from entering the sockets and cast her. 

This is my baby and she is amazing. This is Lucy. Even if Lucy would have died I would have been honored to see her through her earthly journey. Life is precious, no matter how short it is. And our stories are precious too. God is always with us, holding our hands. We must seek after Him, for He is the One who brings true comfort and redemption. 

I thank you, Jesus, from the bottom of my heart for taking on death so that I and my loved ones can have life. I owe everything to You, my good God. 

I passionately ask that you share this story because the world needs to hear hope.

The world needs to see light in the darkness. People need to know that doctors are just human beings and do not know everything. Even if death happens, God will bring good from the bad, for there can’t be an Easter without a Good Friday. 

Turner Syndrome Baby

I live today with two miracles, Rhett and Lucy. I also am standing here with two losses, my first two babies and I know that one day we all will be united in paradise because of what Christ did 2,000 years ago and what He is doing today in my life. 

I stand here in the strength and love of Jesus Christ.

There is always hope. 

I put together a video of Lucy’s first year for her first birthday. I invite you to watch her journey

Stay Connected:

Are you on our email list? We treat our subscribers very well, publishing freebies such as Christian Challenges and even publish free at home retreat guides. We write a lot about finding your connection to God through different, unique ways like a 30 Day Christian Challenge or devotionals based off of worship songs and loads more! Why not sign up? 🙂

We also are on social media and we invite you to follow us on our Facebook page, Instagram, and Pinterest.

Right now we have a fantastic free 5-day Challenge. Join the free 5 Day “I Need A Break” Christian Challenge. If you have been feeling a little worn down, tired, stressed, or you just need a simple little break, then this Challenge is for you!  Sign up below and make sure to whitelist our email so you actually get your Challenge and it doesn’t go to your spam folder.

I again ask if you could please share this story. There are so many women out there who believe their baby has no chance because there are so little stories out there of survival. A Turner Syndrome baby can make it. I have found so many survivors. And even if a Turner Syndrome baby doesn’t make it, I want everyone to know that the journey is worth it. The journey of walking through the pain with your unborn Turner Syndrome baby is a hard road, but a good one, for all life, no matter how short, is good. 

Additional Resources:

If you find yourself in a hardship, I created an Epic Battlesong Worship Playlist. The songs on this playlist are the ones I listened to when I was journeying with Lucy. God used these songs in amazing ways in my life, and I hope that you find as much comfort and strength as I did. Check out the playlist here.

Another great free resource we have available is an e-book with eleven different prayer practices that help with overcoming pain, disappointment, or loss. 11 Prayer Practices For Healing Through Christ.

I was carrying a Turner Syndrome baby and didn't know until week 18 of pregnancy. Her survival rate was the smallest of a fraction, practically a death sentence. Lucy was the baby I dreamed of for many years. Little did I know she would have to fight for her life and so would I.