Read some of our family stories below.


Brain Anomalies

Charlotte’s story was one of many surprises. From finding out we were expecting, to receiving her diagnosis, and finally, to the length of time she lived on Earth. Through the surprises and ultimate heartbreak, her story is full of grief, beauty, and amazing people who supported us along the way. When I walked into my 20-week ultrasound I was nervous, but not expecting anything out of the ordinary, the ultrasound tech was kind but quiet, nothing seemed off until she printed out a few photos and handed them to me and they were only of her feet, my mama heart knew something wasn't right. 

The doctor entered the room and after his initial greeting, he suggested we Facetime my husband who had stayed home with our daughter who was sick. The doctor proceeded to open a single image on the screen and immediately I saw the “problem”; I didn’t need the doctor to explain it. Everything we knew and expected crumbled to the ground at that moment and we instantly felt grief and fear like we’d never experienced! 

Our daughter was given an adverse diagnosis called anencephaly. We were told that her chances of survival after birth were zero and, according to the statistics, she only had a 33%  chance of making it to her delivery date. We knew what would come next, it was so expected that I barely remember the doctor saying the words, “would you like to terminate this  pregnancy?” Without hesitation, in unison, both my husband and I said, “no, that is not an  option.” How could we even consider ending the life of our baby who was moving and growing,  and had a strong heartbeat? We couldn’t and wouldn’t end the precious life that was growing in my womb. 

The range of emotions changed by the second, from sadness to anger, from fear to disappointment in my body, and an overwhelming loneliness; all culminating with the realization that our daughter was going to die and there was nothing we could do to help her. The helplessness of a parent who can’t help their child is excruciating. 

Endless questions flooded our brains; how long could she thrive in the womb? Can she make it to her delivery day? How long will she be with us? What happens if she doesn’t make it to her delivery date? WHY!?! 

It was at this time, just days after the diagnosis, that we were introduced to an organization that came alongside us as we made plans to welcome Charlotte into our arms. We nervously contacted Laura, the care coordinator, hesitant to allow someone we had never met to enter our lives at our most vulnerable time. From the first time we talked to Laura on the phone, we knew that God would use this incredible organization to carry us through our darkest days. 

To be able to talk to someone who has walked the path of loss and not feel utterly alone was a priceless gift. Laura held space for our breaking hearts, loved on us, talked with us, sat with us, answered the questions we didn’t want to ask, and prepared us as best she could for our journey ahead. 

We prayed for continued growth, strength, and life for our baby. We prayed that she would thrive in the womb and make it to her delivery day and that she would live long enough that her big sisters and all the grandparents could meet her after she was born. Of course, we prayed for healing, and we never gave up on God’s ability to make our daughter whole, but we also accepted that wholeness may not come here on earth with us. 

The date of her scheduled c-section arrived and never in our lives had we felt such a range of emotions from moment to moment. The c-section went flawlessly and Charlotte entered a world that would never be the same again. Her strength and beauty were breathtaking! God answered our prayers and her big sisters and grandparents were able to meet her and spend all day with us and her. Ultimately our sweet girl, Charlotte Mae, lived for three and a half days.

Those days were beautifully hard. It was amazing to hold her, talk to her, take her outside  (thanks to an awesome nurse that helped us break a few rules), and give her a bath; but we knew her time was limited. In the same breath, we prayed for her to stay with us as long as possible and for God to take her home to heaven where her tiny body would be whole and perfect. 

Laura’s wise and peaceful presence was with us for many hours at the hospital both on delivery day and the following days. Sh

Charlottes story

e was on our team and had our backs throughout communications with hospital staff and our families waiting in the waiting room. She helped us make memories of Charlotte, both emotional and tangible; we put tiny inked footprints on just about everything we could find! 

From the moment we reached out to Laura, we were showered with love. Laura not only gifted beautiful keepsake items to our family but she sat with us in our sadness, in our grief, and ultimately our joy. She is living proof that the complete darkness isn't dark forever.  Light does begin to break through the heaviness and darkness of grief. 

Thinking back on the past year, I wish I had known who I would become. In the beginning, I  didn't know how I, we, could possibly process the loss of our daughter. Yet here I stand, next to my husband and two living daughters - a new me. I wouldn't be where I am if it weren't for  Laura and her organization. 

Reflecting on our time in the hospital, an unexpected experience we had was the peace and joy our daughter brought to the labor and delivery floor. Because of her diagnosis, her story was shared among the doctors, nurses, and staff working that week. Many shared the peace they felt when being in our room and how they were in awe of our journey and her life. We are confident that Charlotte’s short life on this Earth made a huge, lasting impact on many lives! 

To those who are walking a similar journey, a journey full of unknowns and impossible loss, please know 

you are not alone and you are loved. The journey isn't easy but there are  communities of loss parents ready to walk with you, sit with you, listen to you, and cry with you. 

I read somewhere that grief is like rain puddles that never fully disappear. Sometimes they are small, barely fitting around your feet, other times they are big enough to swallow you up. The ever-changing size is much like grief. Sometimes you feel as though you are going to drown,  other times you are able to pick yourself up and feel the sunshine. 

Our daughter’s life taught us that you aren't promised tomorrow, every moment is precious. We have learned to find the joy while we grieve and the beauty in heartbreak. That grief and gratitude are not in competition; they coexist. Love does hard things and they are all worth it. 

Don't lose hope. Don't give up on your sweet babe. You are not alone. You are loved.


Cleft lip/palate

My Beautiful Boy: the Gift of Two Smiles

When my husband and I walked into the doctor’s office for our baby’s 20-week anatomy scan, we were buzzing with excitement as we took last-minute bets from family members on whether it was a boy or a girl. It had been a difficult season for our family: we had lost a friend unexpectedly only a few weeks prior. We were still in shock and grieving, and had looked to this appointment as a marker for new hope. When the technician called my name to go back for the scan, we walked back expecting to leave with new pictures and the gender; we also got a diagnosis.

During the ultrasound, the tech told us right away: it’s a boy! I had guessed it, but my husband was in shock. As a pilot who pulls G’s regularly, the lore is that you only have girls. We sat there squeezing each other’s hands as we processed the news while the technician took pictures of the baby. She was smiling as she worked and kept telling us what a beautiful boy he was. She asked me to lay on my side so she could get better pictures of his face. She kept trying to take so many pictures of his face, which I thought was a little unusual, but I assumed it was so we could have them to share with our family.

As we waited in the room, we talked about boy names and laughed at my husband’s disbelief. When the doctor came in, we smiled with him and celebrated that a little boy was joining our family. After a minute, he transitioned and said, “Everything looked great on the scan, except for one thing.” Wait, what? “It looks like he has a cleft lip, and may also have a cleft palate.” Images of late-night Operation Smile commercials came to my mind. “I’m not entirely sure what the surgery schedule will be like after he’s born…”, he continued, but I wasn’t processing any more information. At this point, I was crying. My husband was stone-faced, but I could see he was holding back tears. Surgery? On our newborn son?

We went home, heavy with the news. My dad was visiting and had been babysitting our almost 2-year-old daughter. We kept the diagnosis to ourselves for several hours, but eventually my dad asked, “And everything was okay with the scan?” We slowly told family members over the coming months, whose reactions ranged from disbelief to sadness to research-oriented. My emotions encompassed that entire range, but ultimately, I leaned into research to gain as much knowledge as possible to prepare for our son. As a Ph.D. student in Marine Fisheries Ecology, I like to joke that I took a temporary break from my program in marine sciences and worked on my Ph.D. in cleft children and programs. I joined Facebook groups, such as Exclusively Pumping for Cleft Cuties and Cleft Palate Mom Support, which provided a wealth of experience and connection. Over the course of a month, I interviewed six different cleft clinics across the eastern half of the U.S on their care approach, experience, and timelines. I learned that our son’s care would likely not consist of just one surgery after birth, but several surgeries, specialized orthodontics, ear tubes, and speech therapy: care that would likely span the first two decades of his life. To say we were overwhelmed puts it lightly. There were many tears, and I often wondered, How can I stay in my Ph.D. program when I am about to have a baby with all of these specialty feeding and surgical needs?

After we picked a cleft team, it got a bit easier. The coordinator for the team became like a good friend: she was always a phone call away and so happy to talk with us. She sent us the expensive specialty feeding bottles we needed free of charge, and set up pre-birth consults with the surgeon, speech language pathologist, and social worker, so we could be at ease and feel prepared when it came time to welcome our son into the world. It can be difficult to know the extent of a cleft from an ultrasound, so they ensured we were prepared to care for him regardless of the severity.

When our son was born, a pediatrician was waiting in the room to assess him. After his brief assessment, they placed him on my chest so I could see him for the first time. The pediatrician told us, “He has a severe cleft lip and palate. No soft palate and only a little hard palate on his right side…” Just like before, I stopped processing and just looked at my little boy, who we named Michael. I won’t lie and tell you it wasn’t surprising to see his defect the first time, but the desire to protect him and the love I already had for him were much more powerful. We stayed strong and tried our best to listen to what the doctors were saying. When we were left alone for our golden hour though, the second the doors closed my husband burst into tears as he held our son’s head in his hand. I knew he wasn’t crying because of how our son looked, but he cried for all that we now knew he was going to go through over the next twenty years. Amidst all of the research we had done, we had also prayed for a miracle. We had still hoped the diagnosis was wrong and that Michael wouldn’t have to undergo all of this specialized care, but we had just been told otherwise. It was a lot to process.

We did receive our miracle in other ways though. Our preparation paid off and Michael ate like a champ with his specialized feeding bottles. Cleft babies are notoriously small, but he put on weight and continually surprised his pediatrician at each visit. It was an incredible amount of work for me to exclusively pump for him, but I was able to do so for 9 months (with 600 hours logged on one set of pumps alone) and maintain my schoolwork. Through Michael, we were also able to teach our babysitter, who was also a missionary, cleft-specialized feeding tips as well as how to use the specialized feeding bottles. We were able to send feeding supplies with her to South Africa, where these materials are extremely expensive and difficult to acquire. When it’s hard to stomach the challenges Michael has faced and will face, I find some peace knowing that our experience with him was able to help others, and I hope he will find peace in it one day, too.

He received his first surgery at 8 weeks old: his lip repair. While I expected to be nervous for him to undergo a procedure at this age, I was not prepared for how I would feel after his repair. I cried tears of relief when I held him in my arms after the surgery, but I also cried tears of grief as I realized the sweet little smile I had fallen in love with over the past 8 weeks was gone. I’ve fallen in love with his repaired smile now, but a photo of him at one-week old is the background on my cell phone. Michael’s team did an incredible job giving him the perfect repair, but he was made perfectly before then, too.

I wish I could go back and give myself and my husband a hug as we received the news in the doctor’s office. We were so filled with fear for our son at the time, but we had no idea what a gift his sweet cleft could be, too. During my original research, I found that cleft lip and palate babies are born at about 1 in 1,600 in the U.S. and I would feel so sad thinking: What are the odds my baby has to be that one? Now, I feel my family has been given a unique gift to be 1 in 1,600. We’ve had the privilege to love many different smiles on our happy, healthy boy. We’ve made wonderful friends with similar stories we never would have met otherwise. Despite the struggles that can come with a cleft child, we know Michael will be able to encourage and help others with similar conditions, and the capacity of our hearts has multiplied as a result. In his one-year-old life so far, he’s defied the odds of his diagnosis and been a complete champion through every step. And while there are some areas that require a learning curve when parenting a child with a cleft, they’ve now become second nature and I rarely think about his cleft on a daily basis. In fact, contrary to the impression I had when we received the diagnosis, raising him feels no different than raising our daughter. I still wish I could be the one to undergo the procedures for him (I often have dreams that I do), but as a parent what I can do is be informed and be there for him every step of the way. At the end of the day, the joys of his life far outweigh the difficulties associated with his cleft: in fact, they cannot even compare. His life is a precious gift, and the ultrasound technician was right. He was, is, and always will be, my beautiful boy.


Congenital Heart Defects
This story was originally published at Live Action on March 13, 2021 by Nancy Flanders and is reprinted here with permission.

Amanda and Chris Rose had been waiting to adopt a child for two years when they received a call about a baby boy who had been born with a congenital heart defect and needed a family.

Within three hours of receiving that phone call on September 3, 2020, Amanda and Chris said yes to adopting baby Jeremiah. The next day, they were able to meet him for the first time, and be there with him for his first open-heart surgery. They were able to adopt him when he was two weeks old.

“It was definitely kind of overwhelming because he was intubated,” Amanda told WFMY News 2 of meeting Jeremiah. “He had a breathing tube down his throat the first we met him.”

Chris added, “At the very beginning it was definitely a little scary.”

But the couple knew that Jeremiah was meant to be their son. Born with right hypoplastic heart syndrome, Jeremiah’s right ventricle doesn’t work. The left side of his heart is forced to do all of the work — the reason people with the condition are often said to have “half a heart.”

Amanda, a nurse at St. Joseph’s Women’s Hospital in Tampa, is familiar with the team across the street at St. Joseph’s Children’s Hospital who will be caring for Jeremiah. His first surgery was meant to be “like a band-aid,” she explained. While there is no cure for congenital heart disease, the survival rate has increased by 30% in the last decade, according to the CHD Coalition. Jeremiah’s surgeon, Dr. Karl Reyes, Chief of Pediatric Cardiac Surgery at St. Joseph’s Children’s Hospital, said he believes Jeremiah will thrive.

“There’s only a very small percentage of babies that we cannot help nowadays,” said Dr. Reyes. “The sky’s the limit. I think as long as we’re following them and making sure that they’re being you know closely monitored. I think they can do many things.”

Jeremiah is now six months old and has been released from the hospital on a new special at-home monitoring system. He wears a pulse oximeter to measure his heart rate and oxygen levels, which can alert the doctors and nurses at the hospital of any concerns. As he awaits his next surgery in a couple of months, he can be at home, bonding with his family, rather than in the hospital. Amanda said there have been a couple of occasions in which they had to bring him in to see the cardiology team based on what the pulse oximeter was reading. After his next surgery, he is expected to need one more at some point in his life.

Jeremiah’s future looks very bright with his adoptive family as the advancements in care promise to help him live a healthy life.

“You never know… what God has in store for you,” said Amanda. “And I know there was a Jeremiah-sized hole in our hearts. And he just fit perfectly.”


Spina Bifida

This story was originally published at Live Action on  by Nancy Flanders and is reprinted here with permission.


A one-year-old girl with myeloschisis, the most severe form of spina bifida, is now thriving thanks to doctors who performed surgery on her when she was still in her mother’s womb.

Little Peyton’s parents, Kyle and Alison, were 19 weeks pregnant when doctors told them that their baby girl had the condition which caused her spinal cord to be exposed to amniotic fluid, leaving her nerves susceptible to damage. She was at risk of developing hydrocephalus – fluid on the brain – and the condition could cause the inability to walk along with other health issues.

“That is probably the hardest thing you can hear,” Alison told Fox 21 News. “It felt like someone had punched me in the chest because it was just, I had no idea it was coming, and so it was pretty hard to hear.”

While some parents decide to abort when they hear such a diagnosis, Kyle and Alison decided to “give her the best chance that we could.” They were referred to the Colorado Fetal Care Center at Children’s Hospital of Colorado where they met Dr. Ken Liechty, the pediatric fetal surgeon who would perform surgery on their preborn baby girl.

“In this procedure, our highly specialized team goes in and opens the uterus and operates on the fetus, and that’s done early in gestation, around 23 to 26 weeks,” Liechty explained.

Peyton, though still a preborn child – a fetus – at the time, was not simply treated as part of her mother’s body, but was rightfully treated as a human being, as a patient, who was in need of specialized care.

“They cut your belly open and they bring her little back up and they hold her, and they don’t completely take her out of the womb,” said Alison. “They just hold her and patch it and sew it and put her back in, and then somehow put everything back together.”

Kyle and Alison were shocked at the idea of it all, but they knew it was going to give Peyton a fighting chance.

“If you do nothing and these babies are born, about 90 percent of them are going to need what’s called a ventriculoperitoneal shunt, which goes from the ventricles in the brain down into the abdomen,” said Leichty. “So it’s a piece of plastic that carries fluid from the brain to the abdomen, and these babies need to have these revised repeatedly… Once you have it, you have it, you don’t get away from it.”\

According to Leichty, fetal surgery reduces the risk of needing a shunt down to 40 percent. In some patients, the risk of needing a shunt drops to 25 percent. And for the children who do undergo the surgery, they are more likely to walk independently than those who don’t undergo it.

Alison calls the day of Peyton’s diagnosis “the worst day” of her life, but says “it gets so much better from there.”

“It’s not a fun day, obviously,” added Kyle. “But after you’ve lived through it, it’s kind of like ‘oh, that was not that bad.'”

Peyton did well in surgery, and now, nearly two years old, she has not needed a shunt. “Glory to God, she is almost gonna be walking soon,” said Alison.

“She’s a miracle baby,” said Kyle. “I mean, you wouldn’t know the difference from any baby, really.”

Her mother calls her a “spitfire.”

“She’s very loving and sweet,” said Alison, “but she also has determination when she wants to do something, and so really whatever she wants to do, she’s going to do. I really believe that.”


Trisomy 13

Every time Hannah Faith’s parents see a butterfly, they think of her.

Kellie and Mike Carr were expecting their second child when the news that she might have a genetic condition called Trisomy 13 changed everything. Their resilience, faith, and the prayers of others strengthened them as they carried Hannah to term and in the months between her birth and death. She is remembered as “a beautiful, strong, and precious blessing from God who enjoyed hearing mommy read her stories and sing her songs, and who loved being held by daddy and her big sister.” 


I first heard Hannah might have Trisomy 13 when my doctor called me at home and told me that my bloodwork came back and that it was likely that Hannah had T13. He went on to say that it is a chromosomal condition, and he shared information about some of the health issues babies with T13 might have including cleft lip, brain abnormalities, and heart defects. He said that most babies with T13 don’t live very long once they are born and that some pass in the mother’s womb before the third trimester. He was very apologetic to share this news and offered an amniocentesis to confirm the diagnosis, but we declined due to the risk of miscarriage. We put our faith in God because we knew Hannah’s life was given to us as a blessing, and we were going to do everything we could to provide what she needed to survive. 

I was connected to a service that provided me with a parent care coordinator. A friend of ours had been supported by that service as they carried their baby with a prenatal diagnosis to term, and she suggested we reach out to them. Our first phone contact was the week before Hannah was born. It was extremely helpful as a lot of valuable information was shared! I felt encouraged because I was able to talk with someone who was not only familiar with prenatal diagnoses, but who was knowledgeable regarding T13 and would be walking beside us during our journey! I felt hope because she knew other T13 babies who were born and who have lived to their first birthday and longer. This service had helped other families and precious babies, and they could guide us on how to communicate with the doctors so we could be able to best advocate for what we wanted for Hannah’s birth!  

They provided comfort, hope, resources, and guidance. They quickly arranged an appointment for me with an OB who delivered at a hospital with a larger NICU so that we would have the care we needed for Hannah. They helped me write a birth plan on short notice and provided a peer who was so comforting and right by my side during Hannah’s delivery! We had not met before, but there she was giving me strength & peace. They connected me with a mother whose baby had T18 and she has become a special friend to me! It’s been very comforting to talk with someone who has walked on a journey similar to ours! They also connected us with a NILMDTS photographer. She was able to capture photos of Hannah on the day she was born. They had volunteers who gave us a personalized quilt with Hannah’s name on it & a special bracelet for her to wear! They connected us with an amazing neonatologist who specializes in the care of babies with T13. He was so helpful in diagnosing a health complication Hannah experienced and told us what testing we needed to ask for. We are forever grateful to him! We feel that God worked through him and others helping us have more time with Hannah that we would not have had otherwise. 

One unexpected experience we had with Hannah was that she was born breathing on her own! The doctors did not expect her to be born breathing. God breathed life into her, and one of my best memories of Hannah was hearing her cry at birth. 

I would tell parents experiencing a prenatal diagnosis to stay strong in their beliefs and carry to term; even when doctors continue to ask several times if you want to terminate. Advocate for your baby inside and outside of the womb because some things can’t always be explained by medicine or science. And reach out to organizations that provide support like we received! In a time of uncertainty, a parent care coordinator can help guide you, provide resources, help you create a birth plan, and provide encouragement! 

What would you say to medical providers from the perspective of your experience as the mom of a baby with a life-limiting prenatal diagnosis? 

I would tell medical providers that as the mom of a baby with a life-limiting prenatal diagnosis, Hannah’s life was special and that her life mattered. I would tell them that T13 and 18 can be compatible with life and that some babies with T13 and T18 have better outcomes and bring a lot of joy to their families! Help families understand the varying degree of outcomes for babies with trisomy diagnoses. Don’t paint a grim picture that all babies with T13 are going to pass before birth, at birth, or before their first birthday. And please allow fetal heart monitoring during delivery.  

Hannah’s life taught us that God’s strength and lots of prayers will carry you through. That our faith and the faith of others can be made stronger through seeing all of the prayers that God answered around Hannah’s life. She also taught me to fight hard and to keep advocating.


Trisomy 18

Geneva and Chris
Mom and Dad of Marin 
Diagnosis: Trisomy 18
August 20, 2011 – September 14, 2011

Diagnosis Story

Walking through an adverse prenatal diagnosis was an extremely challenging time of my life. It was also a time of extraordinary growth, joy, and hope. At thirty-five weeks in my pregnancy, my baby was diagnosed with Trisomy 18. Prior to this, concerns had been growing about my baby’s health. My twenty-week ultrasound identified choroid plexus cysts on my baby’s head. These cysts are a marker for Trisomy 18, although other markers are usually present. Since the ultrasound did not identify other concerns, and my husband and I were not interested in genetic testing, my doctor recommended a follow-up ultrasound in 2-3 months. At thirty-two weeks, a follow-up ultrasound determined my baby was behind projected growth, her heart had not developed properly, and she was not opening and closing her hands normally. We were then referred to a perinatologist for further fetal monitoring and evaluation. After multiple weeks of monitoring, my husband and I decided to proceed with an amniocentesis as we thought this would provide us and hospital staff with information to prepare for any special considerations and care our baby would need following delivery. The week following the amniocentesis, I had a fetal monitoring appointment. While at that appointment, a doctor who I had not seen before walked into the exam room. She turned off the monitoring equipment, informed me my lab results were back, and then stated my baby had Trisomy 18. I remember a wave of shock and fear washing over me as I absorbed these words. I thought there must be some mistake. I remember asking the doctor if there was any way the lab results could be incorrect. It did not make sense that my baby, who I could feel kicking inside me, had a condition that would cause her premature death. I remember asking the doctor if I could have a copy of the lab report and also asking “What do I do now?”

The doctor was not prepared with guidance about next steps; however, she suggested contacting a perinatal hospice called String of Pearls and wrote down contact information on a yellow post-it note. I walked out of the appointment with every step, word, and breath feeling mechanical and hollow. I drove home and waited for my husband to return home from work. When I told him the news, we both cried and then

Marins story

 kept reading the lab report as it did not seem possible this was happening. It was an afternoon and evening of tears and sharing our news with family and close friends. That evening, as I continued processing the amniocentesis results and their meaning for my baby and our family, I kept revisiting the String of Pearls website. I reached a point when I realized I needed to ask for help. The next morning, with what felt like a mountain of courage, I emailed String of Pearls. I quickly received a professional, thoughtful, and compassionate response. It quickly became clear that String of Pearls was going to be a lifeline in the midst of my sorrow, confusion, and fear.

Following my baby’s diagnosis, I struggled with fear from the uncertainties surrounding her condition, from the possibility of having to make medical decisions following delivery, wondering if I had somehow caused her condition, and wondering how my family and I were going to survive her death and the aftermath of that experience. I wish I had more deeply embraced the time I carried my baby, and created even more memories with her. I wish I had been able to trust that even in sorrow and confusion, joy, love, and hope remain.

String of Pearls came alongside me providing guidance, practical suggestions, and compassion as I navigated the uncertainties and journey with my baby. The String of Pearls support coordinator was a light in the darkness I was walking through. She gently connected with me, taking time to learn more about my story and situation; and answer my questions. She reached out on a regular basis as my pregnancy progressed, providing emotional care and support. She provided a keepsake kit and information on creating a birth plan and funeral & memorial planning. Following my baby’s delivery, the support coordinator assisted the hospital I delivered at with setting up hospice care so that we could take our baby home. After my baby passed away, the support coordinator continued reaching out, including at anniversary and milestone dates, in thoughtful and caring ways. She also provided opportunities to connect with a community of moms and families who had walked a similar journey to celebrate, honor, and remember the lives of our babies. The hope, comfort, and healing I received from String of Pearls’ care and support was beyond measure.

We had one very unexpected experience with Marin. Hospital staff told me and my husband and that it was unlikely our baby would survive labor and delivery. So, we prayed for the gift of time, hoping for minutes or hours with her at the hospital. Our baby survived birth and although she was considered medically fragile, she was stable and came home with us two days later. We are grateful for the unexpected gift of holding and caring for her for 24 days and in the comfort of our home.

To parents who are experiencing a prenatal diagnosis, you are not alone. There is professional and compassionate support and resources available to you and your family as you walk this journey. Your baby’s life, no matter how brief, has immeasurable value, beauty and meaning. Even in the sorrow and confusion, you will find joy and hope in the miracle of your baby’s life and story.

To medical providers, as a parent of a child with T18: Your words or lack of words matter. Do not be afraid to weave compassion into the clinical perspective you provide. Silence can be even more hurtful than what is said. Parents will receive comfort from providers acknowledging their situation and baby in a compassionate way. Something as simple as “I am so sorry” is meaningful. 

Even with a Trisomy 18 diagnosis, I continued to hope that my child would be one of the few T18 babies that survived past the first year of life. My child, her life, and our

 time with her had immeasurable value, meaning, and beauty. 

Terrence Cardinal Cooke’s quote from 1983 captures the essence of what I learned from my child. 

“The gift of life, God’s special gift, is no less beautiful when it is accompanied by illness or weakness, hunger, loneliness, or old age. At these times human life gains extra splendor as it requires our special care, concerns, and reverence. It is indeed in and through the weakest of human vessels that the Lord continues to reveal the power of God’s love.” 


Trisomy 21 (Down Syndrome)

Sefanits Story resize

We were given a prenatal diagnosis. We opted to do the recommended genetic blood screening and were awaiting results. I got a call while at work and knew immediately something was different when I heard my doctor’s voice on the other end. After pleasantries, she said that she was calling to tell me the results of the blood test and said very nonchalantly that there’s a high probability that our child does in fact have Trisomy 21. She congratulated me and told me she was referring me to a fetal specialist for further monitoring, in addition to continuing with her. I was a bit in shock but in retrospect, I have always appreciated the way she told us. Coming from the perspective of believing our baby is just like any other baby, our doctor wanted to relay that in how she communicated the news. 

I left the office and drove home. I still remember the walk from my car to our apartment, thinking of how to tell my husband the news. I came in and told him I just got a call from our OBGYN. I tried to be just as frank as she was. Unlike my doctor though, I broke down in tears. We held each other and cried. Looking back, this was the beginning of our process of grieving the child we thought we wanted.

We were lucky. Our doctor immediately asked us not to google “Down Syndrome” and directed us instead to the Down Syndrome Association of Houston. We reached out to them and started learning about this new life. We got a lot of good information very soon. Looking back however, one thing I do wish I knew more about was how Down Syndrome occurred and its random nature. Being this was our first child, I think I had some level of subconscious fear that all our children would have some kind of chromosomal abnormality. Once we had our child though, fear of having future children quickly disappeared as we were both fell in love with our sweet boy. Having more like him would only be welcomed.

I was very fortunate to be supported by another family who is also lucky enough to have a child with Down Syndrome. The day of our first appointment with our fetal specialist I was trying to wrap up at work to make it to the appointment on time when I saw a new email come through. It was from a woman named “Aida” which is also the name of my aunt who had recently passed. I didn’t know Aida very well, but in her email, she was asking us to publicize a radio show that she was involved in that was about children with different abilities. She specifically said in the email that she has a child with Down Syndrome. I immediately knew this was for me. That it was meant to comfort me in some way. Remember at this time, we didn’t have an actual diagnosis, just a strong probability. So, we were still in a kind of limbo – not knowing for sure and praying that our child would be healthy. Reading this email though, something in my spirit told me that my child will in fact have Down Syndrome. Despite being tight on time, I sat down and wrote an email to Aida introducing myself and briefly telling her of my situation. She immediately wrote back and offered to introduce us to her son, Michael. I didn’t know this at the time but that was exactly what I needed. A few days later, in comes a cute, rambunctious, and sweet 3-year-old boy named Michael. He walked in my office and came straight over to give me a hug. I can’t put into words how helpful this visit was to me. Before this meeting, all I had were the words and the idea of Down Syndrome. It was big and scary and overwhelming. It was disability and different and not able. I was immediately worried that we wouldn’t be able to give this child what he needed. Then walks in this child, just as adorable and just as real as any other child. He wasn’t a diagnosis; he was a beautiful child. And, what made an even bigger impact than his cuteness (which is saying a lot because he is extremely cute!) was the love I saw on his mother and teen sister’s face. I felt my fear dissipate and my confidence grow as I looked at their adoring faces.

When we were pregnant and preparing for what was to come, we read a lot about all the medical challenges children with T21 often have. Something unexpected is how healthy are child was and is. 

I would tell parents who receive a prenatal diagnosis that as hard as it is to do, try not to worry. Do your best to enjoy your pregnancy and remember babies with Down Syndrome are just like any other baby. Also, the best advice we ever got is that children with DS will go as far as they’re pushed. So, push them to find their limits and treat them just as you would your typical children.

To medical providers, I would like to say don’t be afraid of our children! 

Our child has taught us that a person’s life is not found worthy because of success or perfection. Life has dignity in its own right and a person is special and good and loveable just because they are. Joy is free. 


Rare Disorders and Syndromes (Klinefelter's Syndrome)

Ashley Gist – Baby DeMeire (Klinefelter’s Syndrome ALIVE) Second pregnancy with prenatal diagnosis considered abortion

Dear new mom or dad,

Congrats on your pregnancy.a Your bundle or bundles of joy will always hold a special place in your heart. With God willing you will be blessed to enjoy plenty of moments with them. 

This letter likely comes to you at a difficult time and I’m extremely sorry for the reason you’ve been given this letter. I’d like to briefly explain why I am writing this letter to you. Both of my pregnancies have had prenatal diagnosis that had undeterminable outcomes. My first however was far more severe than my second. 

My first pregnancy I carried twin girls Grace, and Genesis, to 28 weeks and 6 days. The doctors did not know with Genesis’ diagnosis what quality of life she would have or even if she would survive outside of the womb. She did, and for most of her life that meant either on a ventilator or with some form of support. However I was still able to enjoy being blessed by having my child with me. Grace did have complications nowhere near as severe as her sister and is doing great, she’s a two year old who loves to play and explore and enjoys cuddling mostly with her dad. After nine months in the NICU we lost Genesis. I firmly believe that the healing she needed was nothing here on Earth we could provide to her, that it was only something God himself could provide to her.  I have peace knowing I spent nine months with Genesis when hours were not even promised when she was born.

My following pregnancy was fresh on the heels of Genesis’ passing. I was a great ball of emotions and initially determined if my second baby had any issues I would not subject them to the same things Genesis’ had gone through. I thought abortion was the route for my family. To this day I struggle with the fact that I had even considered it. Nevertheless, I continued on with my pregnancy waiting for a major scare similar to the one we had with my first pregnancy. However this time I found out there were no life threatening issues, and I was having a little boy. I was terrified of having a son, and even more so another child that might need more help than what myself or his father would have provided to him. Regardless, we continued the pregnancy, and my son was born. He has been the most delightful baby I could’ve had. His diagnosis has not affected him yet and I’m doubtful it ever will, we still do take extra steps to ensure he is receiving the best care still.

My advice to you throughout all of this is to find time to pray and find peace for yourself. Prenatal diagnosis is the hardest part of pregnancy right after delivery. I was able to find peace the first time by finding comfort in a friend who had already been through her own prenatal diagnosis. I prayed a lot during that time though and begged God for clarity and relied on my husband and my friend. Throughout the grieving process it’s hard to not ask why me or why is this happening. I have found the most peace not looking for answers but rather solutions to the issues in front of me. Your child can defy the odds regardless of their diagnosis. Their life is important. In cases where the diagnosis is life threatening  you can still hold hope and pray like I did that you may be blessed with some time like I was. 

Bringing a child into this world is hard enough without worrying about your unborn health. Still, as best you can please take time to enjoy the little soul you are carrying. They are still blessed and protected. 


If you have received a prenatal test result for your child, we are here to support you. Our services are free. Talk with one of our nurses to determine if parent care coordination would be helpful for you.