"Before I formed you in the womb, I knew you, before you were born I set you apart;" Jeremiah 1:5
Survival rates for extremely early preterm babies have improved dramatically over the past 15 years. In 1995, practically no children survived when born as early as 22 weeks gestation age, while in 2008 21% survived.
Below you will read stories from families with babies born at 22 weeks. You will read survivor stories and stories filled with indescribable pain. These babies survive and thrive, when they are given the chance.
“My husband and I have been married for two years, for a year we tried for OUR baby with no luck and on year one of not trying God blessed us with a positive pregnancy test, I was 5 weeks along and we were thrilled. I have three children and he has one, twenty year old, so this was a big surprise for him to be expecting a new baby! At 12 weeks we did our routine bloodwork and found out he was a BOY! After many long talks and prayers we decided he would be Kailor Dean. Kailor means “little warrior.” Little did we know how much this was going to ring true for our sweet baby. At 15 weeks I woke up in the early morning having what I was almost positive was a late miscarriage. Rushing to the emergency room and not knowing if there’s going to be a little heart beating when we saw him was terrifying. But after a major bleed, there he was, being his usual spunky little self. He was always sucking on his thumb, rubbing his face or waving at us. They sent me home and said everything looked good, that sometimes this just happens. Relieved, is the emotion we felt. After two more weeks and the bleeding continuing with baby boy still healthy and growing as he should I was sent to a Maternal Fetal Medicine specialist a town over. Same diagnosis, this just happens sometimes. We were scheduled to return at 20 weeks to follow up, the bleeding never stoped and honestly I as well as my doctors were in shock that Kailor was unaffected by this. At 18 weeks, the diagnosis came unexpectedly during a routine ultrasound. A subchorionic hematoma reared it’s ugly head. They aren’t even that uncommon actually, but most of them disappear by 20 weeks but unfortunately mine continued to grow instead of disappearing. “It increases your risk of a miscarriage” “You should consider terminating this pregnancy” But I wasn’t giving up on my baby. He deserved a chance, he was surviving against the odds! At our 20 week appointment with the MFM he was not pleased with the size of the hematoma and by now my body was wearing then, my hemoglobin was low, and I was just not a picture of health. He immediately sent me for blood transfusions, my hemoglobins was 7.2. A normal range is 10+. He said I would be admitted at 23 weeks to start the steroid shots to prepare Kailor for his early arrival. So here I was scared knowing my son was coming entirely too early and after me fighting for my life he’d be fighting for his. But we were ready and I was determined we were going to make it to the 23 week mark! We had made it so far and we weren’t giving up on him. Those next 2-3 weeks were the most frightening of my life. I was in and out of the hospital due to blood loss, 20 weeks passed, 21 weeks passed, 22 weeks passed, we were going to make it! He was going to be the baby who made it against all doctors predictions. The night that 22 weeks 4 days rolled around I suddenly got very sick and passed out at the hospital where I had been for 3 days. I got an emergency blood transfusion which ended up being my last which totaled 10. Yes I said 10! The magnesium trip was started to try to stop labor, I was in indescribable pain (the worst I had ever been), pain medications were started and they didn’t touch it, I thought I was dying. But I got the first round of good news, my MFM said to transfer me, he was ready for Kailor and I ( this is was the NICU) I was thrilled even though I was questioning if we’d make it because I was unstable. During paperwork and waiting on an ambulance to come get me, they had me upside down in the bed to try to prevent me from having Kailor, he was born at 9:45 am. As rare as it is he was born fully in his sac so my sweet boy didn’t even know he had been born. It took seven whole minutes for a pediatrician to make it to him and get him out and it was detrimental to him. His heart was still beating by the grace of god, he was 1 lb 6 oz and 12 inches long, a clone of our youngest son and his daddy but to my surprise the hospital did nothing because he was 3 days too early. Those three days cost my baby his life. We embraced him for 51 minutes til he passed in his mommy’s arms. We are broken and we miss him every single day. I should be in the nicu fighting along side my son like he fought along side me when my life was on the line keeping him alive but instead I’m holding his memory box and visiting his grave. I fight for awareness to be brought to these micro preemies. They deserve a chance.”
- Jessica Spraldin; A Moment with Kailor
“Our Monochorionic-diamniotic (Mono- Di/ Mo-Di) twins (identical twins) Keeley and Kambry were born 18 weeks premature. Mo-Di twins share a placenta but not an amniotic sac. This is a very high risk pregnancy due to being at risk for several things but more specifically Twin to Twin Transfusion Syndrome/TTTS. Twin-twin transfusion syndrome (TTTS) is a rare, serious condition that can occur in pregnancies when identical twins share a placenta. Abnormal blood vessel connections form in the placenta and allow blood to flow unevenly between the babies. We found out we were expecting twins very early on at 7 weeks and the doctor knew from the sonogram the girls were Mo-Di right away. We were referred to a high risk OB which was also a hospital with a Level 4 NICU. We immediately made the plan to deliver there when the time came. We saw the high risk OB where they diagnosed with TTTS for the twins during our 2nd visit at 16 weeks pregnant. We were referred to Cincinnati Children’s Hospital where we would meet with the Cincinnati Fetal Center to monitor the pregnancy and treat the TTTS. The only way to treat the TTTS was by Fetoscopic Laser surgery in utero where the doctors would go in through a scope into Twin A’s (Keeley’s) sac to pull fluid out and also seal the connecting vessels between the twins to stop the abnormal blood flow from the Donor (Kambry) twin to the Recipient twin (Keeley). At the time of the TTTS diagnosis the girls were Stage 2 (there are 5 stages). The girls weren’t in as critical condition when we were first evaluated at 17 weeks so the hospital in Cincinnati sent us home to come back the following week. Dr. Lim there only likes to do surgery when it’s most critical as the surgery puts mothers at risk of going into preterm labor within 10 weeks or sooner of the surgery. We went back the following week and the girls had enough discordance in weight and progression of the TTTS that it could have potentially caused heart failure and without intervention would have killed both of the girls. It was time to intervene and at that time I was 18 weeks and 4 days along. We stayed in Cincinnati following the successful procedure for a week per the doctor’s orders to monitor and were sent home to finish out my pregnancy on moderate bed rest. The week the girls were born I started feeling a little more uncomfortable (being pregnant with twins you are always uncomfortable). I had gone in on Monday the week of with concerns of abnormal discharge and feeling “off”. I was checked and the doctor was suspicious of Chorioamnonitis which is caused by many things but having surgery can be one of them. He was suspicious but because it’s hard to diagnose he sent me home and asked me to come back in 48 hours to recheck. I did go back 48 hours later and didn’t appear there was a confirmation or reason to believe I was in labor or having the infection. By Friday I was 22 weeks pregnant. Something we had prayed for the entire pregnancy. Progression, that one more week of remaining pregnant and the girls being healthy. That night my water broke at home. Before my water breaking and before having the surgery, we were given a 10% chance of the twins surviving by Iowa City. We were given a zero chance of survival though by the Cincinnati Fetal Center. I believe they were able to give a zero chance of survival outcome based on their practice, experience and knowledge of how fatal TTTS is and what they’ve seen world wide with babies born prior to 24 weeks. We were also told that if the twins could make it to birth at 28 weeks they would have a very high chance of having complications. The girls were born at 22 weeks and 1 day on November 24th, 2018. Minutes prior to birth I was told that the girls more than likely would be born stillborn even though I could feel them moving inside at the moment. This was a terrifying time and I’ll never forget the fear I had but the need to be strong to deliver the girls and “deal” immediately following. Their chance of survival before birth at that point of time was 0% because the doctors weren’t sure how they’d be born and what they’d do after birth. As the girls were admitted into the NICU their odds immediately went up. Surviving even the first few minutes, hours and the first 72 hours also allowed their odds to continue to increase. By the end of the first week the girls were given a 65% chance. The University of Iowa Hospital has been working with this population (22 week babies) for the last 10 years which amounts to about 50 babies. They are skilled with the know how and very thorough plans of how to help them grow. The National Average for the survival of babies born at 22 weeks is 10% but at the University of Iowa it is 65%. We’ve been blessed to live where we do and know what we do but it’s all because we’ve also been educated by others. Without a friend from high school having shared her story of TTTS I may not have known how critical the first few days with the diagnosis was and we may not be here today. Sharing our story is really about sharing to help save other babies and help the world to see how we can make a difference. Kambry (Donor twin and twin) came home after 138 days and Keeley (Recipient twin and twin A) came home after 144 days. The girls have had what their medical team calls a text book recovery. They’ve had no major set backs and have sailed through their NICU journey very well. This journey has been nothing short of a nightmare, raw, intense, excruciating and traumatic. We are a long ways out from living day by day for the girls’ health but every day is day by day right now as we work to get the girls off of oxygen and onto the next part of our families journey. Both girls came home with 4 different medications for their BPD and Chronic Lung Disease along with 1.5 liters of oxygen each. We are currently still in RSV season so we are living very isolated to do all we can to ensure their survival. The smallest of colds could kill the girls. It’s very difficult to explain how life at home is for those who don’t understand and was try very hard to explain. There’s just no way to completely paint the picture. No one understands exactly and I pray no one ever has to. I pray all babies get the opportunity to be born at full term or even later term. There are so many leaps and bounds the girls have had to make to get where we are which is why we have completely uprooted our lives and stuff to our guns on protecting their health with our every move right now. Especially during this RSV season. We are looking forward to more and more memories with the girls. And though we are under isolation and are home bound as a family, we are enjoying seeing them grow and just be at home all together. The girls love listening to us and their older siblings. They love cuddles and we really have spoiled them with being held as much as possible. Please keep praying for our family but also pray for other families who might be Graced with such an early arrival of their baby or even a road block that goes against working to save their precious baby.”
- Jade Ewoldt; Keeley and Kambry’s Tribe
“My son was born at 22&3 weighing 1 pound 3 ounces. He was only given a 10 percent chance to live. He amazingly came out with no brain bleeds, his main problem was his lungs. The first 5 months were dreadful. We were stuck at a horrible hospital that led us to believe everything was going okay with him, when everything wasn’t. He was stuck on 100 percent oxygen, having crazy co2s. They finally decided to do a heart echo and realized he had severe pulmonary hypertension. We were then transferred to a level 4 nicu (cook children’s). This was the best thing that ever happened to us. My sons pulmonary hypertension has resolved itself. His lungs were in pretty bad shape so we had to get a trach put in. It was the best decision we ever made. He is flourishing now. We spent 318 days in The NICU. We just got transferred to our transitional care unit where we will stay for a few months then we will be on our way HOME!
He’s definitely a warrior. He has very long story, this is just a little summary. Micro preemies are so strong. We are very blessed.”
- Callie Dawn
“Our story is one of hope, faith, and strength! On November 14th, 2017 Kaylin May was born at 22w6d, weighing a mighty 380 grams (12.8oz). She spent 130 days in the NICU and came home 10 days after her original due date.
We were so fortunate to be at Hillcrest Hospital surrounded by the best NICU team possible. We can't thank them enough for everything they did for Kaylin and the support they provided to our family. The NICU journey certainly had its ups and downs. Thankfully, she had what we like to call a "gentle journey" overall. She was lucky to not have brain bleeds, infections, gastrointestinal issues or skin issues. Her PDA closed after one round of Tylenol, and she only required one round of steroids to be extubated after 45 days. She had 12 blood transfusions within the 1st month of life. The main complications she experienced were related to her respiratory system and her eyes. Her lungs surprisingly matured faster than expected and her oxygen was completely removed before discharge. She did require eye injections and laser surgery for ROP and now wears glasses (that is if weare lucky enough for her to keep them on).
Our family was chosen to be the 2018 Ambassador Family for the March of Dimes Chef's Event. We were recognized for Kaylin's incredible story and were blessed to be able to celebrate her incredible journey with our family and many of her care team during her NICU stay. We also kicked off World Prematurity Day on Fox 8 News and had the opportunity to share our story with all of Northeast Ohio. Kaylin is now 17 months old (1 year adjusted) and meeting milestones and exceeding all expectations! She is truly the happiest little girl with the most contagious smile and brightest blue eyes. Her personality shines through and she is still as sassy and fierce as ever. As we watch our little miracle grow and continue to defy all odds, we can't help to feel proud and blessed.”
- Tonia Bussey
I was 21 weeks exact and i had little blood in my urine went to er they rushed me to another hospital to try to do a stitch to keep her in. That hospital failed broke my water and then told me to prepare for her to be born that day and die. After 48 hours of no labor they came and asked if i wanted to keep being pregnant or for them to intervene. (I chose to keep her) they then sent me home on antibiotics and told me to just wait at home until i went into labor. At 21 weeks and 6 days I went into labor at 1045 at night. Got to the nearest hospital to me and they said they couldnt keep me cause they dont deliver before 30 weeks. I was then ambulanced an hour a way. A different one that broke my water. Got into ambulance at midnight she was born in the hallway of university of Iowa hospital at 1:17am the nurse hit a panic button and people came running they got her intubated and rushed her to nicu. She spent 130 days in the nicu had a grade 2 brain bleed,pda,asd,and bpd. She is now 3 and has a paralyzed vocal cord from heart surgrey and has some lung issues but nothing major.”
- Jessica Torgerson
This is Gage. He spent 120 days in the NICU. He was born at 22 weeks by emergency c-section. My memnranes ruptured at 22 weeks and 3 days gestation, after which I developed an infection. I was at the local hospital at the time, and our high risk centrw would not accept tha transfer as the baby was not viable. 2 days later I was transferred to a high risk hospital. There was concern of sepsis beginning so an emergency c-section was done. He was given less then 5% chance of survival, and we were actually encouraged not to resecuitated. It was advised to turn off all monitors and induce labour, we were told we should deliver and spend time with our baby until it passed away. The team was initially not receptive to our request for intervention. They did agree to attend the delivery and assess at the time of birth, so off we went for c/section.
During his journey we experienced many ups and downs. Initially there was concern for sepsis and infection. He was receiving some pretty intense antibiotics. They were also unable to place a feeding tube, as the initial attempt had perforated his esophagus. We were transferred to the childrens hospital for a guided placement. While there we also had a PDA ligation preformed. Once transferred back to our delivery hospital we struggled to come off of the vent. Eventually he was on room air and we began looking at feeding. He was able to breastfeed well with time. He also suffered from stage 4 ROP, which required surgery shortly after discharge, We left the NICU at exactly 39+6. Once day before our due date. He ended up having hernia curgery after discharge. Today he is 4 years old. He is an energetic and happy boy. He does have a mild CP diagnosis, developmental delay, low vision and some other issues not related to prematurity. He loves to play with his siblings and look at books. He is very curious about the world and how things work around him. He is currently working on learning how to ride a bike.”
- Heather Radford
“James (James Paulo Conway) born 22 weeks 5 days due to being septic with listeria meningitis 4-12% chance of survival but most told me he wouldn't survive the day ( he was born at 6:01AM) 190 days in multiple NICUs. Our faith was definitely tested during his stay specially the first month. He had bilateral grade 4 brain bleeds, hydrocephalus, seizures,intubated for 100+ days at one point on utmost respiratory support. We were told if he survived which was fairly unlikely he would be on a G-tube, trach, mentally retarded, Severe CP, not come home till later in life (around a year or later) and be in a full care facility called Franciscan. He transferred between baystate hospital and Boston children's. He was born 8/19/18 came home 2/27/19 the first 2 weeks were terrifying because if anything went wrong I no longer had nurses or heartless doctors to blame it was only me. But he is amazing and amazes me daily with all he tries to accomplish. Most of his issues we won't know only as time will tell like cerebral palsy, cortical visual impairment due to brain damage/infection. But I know he has fought and surpassed their 24 hour survival expectations, he only had a G-tube and low setting oxygen requirement. He is 8 months old he coos and smiles he responds appropriately to noises. God brought him through this journey as a reminder of what he is capable of and that we have to have faith our faith has been made stronger through James' journey. I'm just glad I didn't listen to the first hospital I don't know how many times they had the end of life/ quality of life talk with us....how often they asked if we were sure we understood what allowing him to live might look like and how it would affect our full able bodied family having a child like James. I can tell you now I don't know what his future looks like or what our life with him will look like but I know every hard conversation, decision, family meeting led me to this point and I'd do it all again to have all the time I've had to hold him,love him, get to know him, and see what fighting and resilience really looks like.”
- Danelle Conway; James Warrior Strong
“This is Percival he is on day 109 of being in the NICU after being born at 22 weeks and 2days. He was born because of incompetent cervix issues and an infection after a cerclage was placed at 17weeks. he was given a less then 7% chance of survival. During his journey we experience, sepsis infection at birth, PDA heart surgery, two ROP eye surgeries and two times with pneumonia. Today he is gestational age of 38 weeks, on high flow oxygen and starting to work on feeding. We are told we will be out of the NICU in the next month (so estimated 140 days in the NICU) The hospital that accepted us was Providence Alaska in Anchorage Alaska. They will try and save any baby. I have personally met a 22w1d who was born here that is now 2 years old and a 22w5d that is almost 3! One of the head Neonatologist here saved his first 22 weeker in 1980 and has just retired. Seeing how strong my son is doing I realize how lucky we are that he was born at a hospital that didn’t even question giving him a chance.”
- Courtney Spencer; Percival the Micro Preemie
“She was a human bein she was another life she had rights and so did we as her parents but they were taken away from us and decided for us that night, not that we didn't try because believe you me we did but were told NO there is nothing we can do she's not 24 weeks and repeatedly got told about how small she'd be how under developed she might be, not have fully formed ears just holes or her nose might not be formed properly to name a few, how very disabled she'd be if they tryed , told us not to believe everything you read when presented by myself with other baby's the same age helped.
You put your trust in a health professional to look after you when your expecting a baby to guide you even more so when you find out you have a high risk pregnancy and I was already high risk due to having only one functioning kidney, well the truth is they did nothing as what was discussed anti natal wise they didn't keep a eye on me and my unborn baby with those promised regularly 2-4 week checks. The care just wasent there from the start , I felt I wasn't advised or supported with anything properly apart from to carry on as normal it's basically out of my hands and there's, but I should of been advised a lot of things and had those promised regular checks on me and my unborn baby at the time. And just maybe I wouldn't of gone into early labour if I'd of been advised and those checks had of took place who's to say I'm wrong it's very debatable. That night I went into labour we asked them to help but nothing , but to then find out weeks later a hospital do and have taken babies at 23 weeks is unforgivable which autumn was 1 day off that at birth the grey area 22+6 and we only got offered cuddle comfort. Its beyond words as parents to find out we did have the right to ask for a neonatal team standing by,we did have the right to ask them to intervene weather they would of is a different thing but we had that right for that to happen but weren't given that opportunity based on incorrect gestational age of our baby they were out by 4 days which again I did question during my pregnancy numerous times, no one listened as a scan machine knows best. I'm not saying our daughter would of survived regardless or lived to tell the tail her self what I'm saying is we and her had that opportunity taken from us by bein Miss informed and having opportunity to discuss ignored. I didn't question my dates that night who dose in labour you never really here a midwife say she's 22 plus 5 or 27 plus 3 it's 22 or 27 weeks I only questioned it afterwards when saw on my labour sheet the mistake in gestation age even that was out by a day their own date given at our 12 week dating scan so what other mistakes can be made???.. many can and have in our case.
All I want to do as a mum and us as a family is put that right and get justice for her and any other familys that this may happen to they need to know they have a right to ask for a team to be near by ask for intervention and have rights and make sure all information is correct and you receive the care needed, be your own advocate and contests if your told NO. This just can't keep happening and Ultimately things need to change. Some hospitals will and some won’t intervene under 24 weeks this should be fluent throughout the country and not a postcode lottery on our babies lives , regardless of what statistics say our babies aren’t a statistic each baby is a individual and even with help if that chance is slim no one knows for sure how a baby born between 22+ weeks is going to respond as each baby journey is different. I'm always going to wonder about the what ifs now I will take this to my grave but if our story can help and people learn from it the health professionals do what they should of done that night regarding our right and input to decide and be more open and fluent with these discussions about what's best and what the parents want , as we do have a say as parents our input is just as important if not more important the two people who created that life then who knows how many babies and there family's may have a chance at the outcome of their situation potentially being very different from ours, no one has a crystal ball no one can predict if our child that night may or may not survived based on other babies shes not other babies she had a 35% chance of survival that’s better then none more so being born alive and showing signs of life and with help how different things could have been, if she of had that chance and everything wasent decided for us and her , based on mistakes made and lack of communication, bad opinions clinical errors, withheld information and being shut down and they did try as, that’s what we wanted for her a chance to live it was her human right we would of said do everything you can for her if she comes out breathing alive which she did , but because of all this we will never know now what the outcome would of been for her and us that's a hard pill to swallow.”
- Sophie Dennis
“My names Kristie Barksdale and I've always wanted a baby girl to add to my 3 boys. June 6th, 2018 I found out I was pregnant and was so EXCITED. I couldn't think of a boy name for the life of me, but had a little girls name picked out for 13 years. I wanted to name her after my dad who had passed away 14 years ago. His name was Billy Joe. On September 26th we found out she was a girl and I was ecstatic. I was going to name her BaileyJoe Anna Barksdale after my dad and grandma. At that time I was going through a lot of stress from bullies targeting my family. On October 9th, 2018 at 22 weeks and 2 days pregnant I was having lower stomach pains that kept getting worse. I had my husband take me to the hospital and they rushed me to labor and delivery. They had me pee in a cup and thays when my water broke. I was told to lay on the bed so they could put the heart monitor on me to find her heartbeat. At that time I had to push and she came out. Thats when the care stopped. She was laying between my legs on the table while they just stood at the end of my bed. I asked them if they were going to help her and they said there was nothing they could do that she was going to die anyways, so in disbelief I picked her up myself and put her up on my chest to keep her warm. I asked them to save her and they said they weren't equipped enough and babies born before 24 weeks couldn't be saved. I told them I had seen them saved on the internet and then asked them to transfer me to a more equipped hospital and that's when they told me she would die anyways and that she was to little. After 30 minutes of begging and pleading and crying I had my husband take pictures and a video of her, so we would always remember her. We watched her gasp for a long time while they stood back and did nothing. Not one time did they touch her. They had my husband cut her chord at 11:30 that night and we watched her gasp for air till she died. At 3:30 am October 10th they discharged us and took BaileyJoe and put her in the nursery to wait for the funeral home to come get her. We cried all the way out of the hospital. We got there with our baby and left with discharge papers. That was the hardest thing I've ever done. When we got home we had to tell my 3 boys that she was gone. That was the hardest thing to do. They were so EXCITED to have a baby sister and the first time they got to see her was at the funeral home in her casket. That whole experience is when my when my whole world had crashed. I felt dead too and empty. The little girl I always wanted was taken from me because the hospital didnt care. Now she lives on in our hearts and in heaven. We now know that she could've been saved, if they would've tried.”
- Kristie Barksdale
“My water broke randomly at 21 weeks. We think I had an infection in my uterus but there was nothing conclusive.
Micah was born 22.4 weeks. He weighed 1 lb 6 oz and dropped to 1.2.
He developed wonderfully! He is now 7 (next week). He’s out of all special ed classes, just a couple classes of added help which I feel will be done after this coming year. He has speech therapy to help with enunciation and has asthma which is completely controlled and only present when he has a bad cold. He’s a typical 7 year old!
- Danielle Pickering
This is the world we are living in. Where the life of a 22 week old baby is a gamble. The one given a chance are surviving and the ones who aren’t given the chance aren’t. I raise awareness for these lives so no other mother has to feel the indescribable pain of losing a child.