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I was 27 weeks pregnant when Landon was diagnosed with right sided CDH. He was given a 0% survival chance in San Antonio Texas. We took a chance to relocate and give Landon a better chance with a specialist team. Landon was born at 37 weeks via emergency C-section. He had a C-type defect with a large amount of liver and his intestines in his chest cavity. Soon he was placed on the highest form of life support, ECMO. The surgeon placed a patch to repair his diaphragm and put his organs back into place. Today Landon is healthy, active and happy. We are so proud of him. He has completed our family!

Our journey has been nothing like we had pictured. We tried so hard for our first baby, only to have every obstacle thrown in our way. At 20 weeks, we found out we were having a baby girl. Later in the week, we got a phone call from one of the doctors trying to go over the results from the ultrasound. In that 10 minute conversation, all I heard was echogenic bowl and you should terminate your pregnancy. We were devastated with the whole situation and not knowing what that meant for our girl. At an office visit, one of our MFM doctors went into great detail about what everything meant. Our baby could have Down Syndrome or Cystic Fibrosis, or it was simply she just swallowed some blood. Everything was looking positive, and they figured she had just swallowed some blood. After she was born, the newborn screen came back reassuring. It wasn't until she was 7 weeks old, we got the devastating news that our perfect girl has Cystic Fibrosis. Our world turned upside down.

Almost 5 years had  passed, and we found ourselves in a similar situation with our son. At 30 weeks, I developed a chronic abruption and was placed on strict bedrest. He decided to make his grand appearance at 34 weeks and was admitted to the NICU where his belly became very distended. He was transferred to another hospital where they performed exploratory bowel surgery and found a large blockage. After they ruled out Cystic Fibrosis, his newborn screen told a different story. He too was diagnosed with Cystic Fibrosis. On top of the diagnosis, the doctors thought it was in our son's best interest to give him an ostomy to let his bowels heal and recover from all the trauma. Multiple surgeries have come and gone, and one day, our hope is for him to get his ostomy reversed. Until then, our lives are filled with doctor's appointments, labs, xrays, throat cultures, worries, fear, but most importantly love.

 Henryk was born with a rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS) where the left side of the heart does not develop fully. Since the chambers on the left side do not develop correctly, the right side must take over all the work and requires multiple open heart surgeries (typically 3) to try to help the blood flow. In the 1980s, these children were called "blue babies" because they didn't have the correct blood flow and lower oxygenation. Most children require a heart transplant sometime in their life to survive.

Henryk was diagnosed at 20 weeks gestation with a heart condition after noticing he only had a 2-vessel umbilical cord instead of 3. After an amniocentesis was performed it was determined his condition was not related genetically. At the age of nearly 5 he had additional genetic screening done and it was determined that he had a genetic condition called SMAD-2 that caused the heart condition as well as his aspleenia (spleen never developed in utero) and his heterotaxy syndrome (organs are not in correct places like intestinal malrotation and aorta on the wrong side). Henryk was very lucky in that he got to skip the first heart surgery which is usually performed in the first few days on life due to his specific anatomy.

Henryk also was diagnosed with failure to thrive because his heart worked so hard he could not gain enough weight by eating on his own so he required a gastrointestinal feeding tube from birth to be able to receive additional nutrition. At 6 months old Henryk became sick with a respiratory illness and was flown emergently to the nearest hospital. He suffered brain damage from lack of oxygen and the doctors told us he would never walk, talk, or get off a respirator based off of the images neurology was seeing. He was able to do all those things and never showed signs of brain damage like they said. Henryk lived a beautiful life for 5 years with a contagious smile and heart of gold. He loved playing with his siblings and loved arts and crafts as well as his favorite movie character Knuckles. He is forever loved and our hero.

Hello, my name is Tausha and this is my daughter Aspen. We have been on a very long journey together. After 5 years of infertility, one miscarriage, 3 IUI's, and Endometriosis, my husband and me put all our savings and prayers into IVF. With much success we were over the moon, expecting our miracle.  

At my 20 week anatomy scan I was told Aspen's brain was abnormal and I would need an MRI. The MRI showed Aspen had Lobar Holoprosenchephaly. At 32 weeks she was measuring 3 weeks ahead, with no other known issues. At 35 weeks Aspen was diagnosed with severe Hydrocephalus with a head circumference measuring 43.2. 

Aspen was born via T-section at 37 weeks, weighing 9lbs 9oz and 21 1/2in long. Her head circumference at birth was 50 centimeters. A VP shunt was placed at just 5 days old. After 34 long days in the NICU, God answered our prayers and Aspen was discharged and she is moving mountains everyday.

Granger’s omphalocele was first identified in utero by his mom who has ultrasound training. Intimidated by the unknowns, and “worst case scenarios”, she found comfort in other moms she met with children with Omphaloceles. 

Born at 36 weeks, Granger’s giant omphalocele was bigger than his head and he had to be immediately intubated. With multiple setbacks, including a bowel obstruction, he finally had some bowel removed and the doctors pushed the bowel back into the abdomen. Leaving only his liver in the omphalocele, this surgery took some pressure off his lungs, but he had a few rough days. His parents thought they had lost their precious boy after a few scary incidents, but Granger slowly got better and continued to improve.

After getting his Gtube, and 117 days in the NICU, Granger finally headed home! He is now celebrating his first birthday.

I am Melisa I am Uli’s mom ❤️ I am also a single mom of 4 other kiddos. Our Journey all started when I found out I was pregnant with my 5th baby, and I went in for an ultrasound.  I was 14 weeks and they thought baby had clubbed feet and they scheduled a follow up ultrasound for 2 weeks later. I thought nothing of it and waited. Day arrived and I went alone and was told my baby had Osteogenesis imperfecta type 2 which out of all of them is the only leathal one. Uli had multiple fractures through out his body in the whom and add to that durning my c section I chose from that day that Uli would be the boss and just asked God if he needed my son up there that I needed things from him before to let Uli know love and to have a purpose and never be forgotten. Uli was born Nov 07 2022 and stayed in the NICU for 28 days and came home on 24/7 oxygen and NG tube. He was so fragile I didn't get to hold him until he was 8 days old on an egg crate but he was so loved by me and his siblings I was worried to have him around a 3 yr old but Gordo showed he loved his brother. After a few weeks home he went back for hernia surgery then home for about 2 weeks and he had an apnea episode where I am almost lost him. He had a 33 day stay at Gillette but they did not know how to care for an Uli so mama searched for somewhere and we fought our way to Nemours in Delaware. We had to leave the other 4 kids behind for 3 1/2 months and I traveled back and forth to be with all of them it was hard but worth it. Uli made it home in May and he spent about 6 months home with his family and Nov 9th 2 days after his first birthday he was hit with covid we stayed at Gillette for another month and almost lost him again but again he surprised everyone and made it home to see us for 2 more weeks but covid made Uli tired and he was ready to let me go even though I wasn’t ready.  He left us 12/22/23 and he stopped breathing despite best efforts from paramedics and docs at Children’s he said goodbye. 

Hi! My name is Lindi and this is my son Hutt.

At 11 weeks pregnant, we were told that our child was sick so we were sent to the MFM for deeper testing. From the ultrasound, they couldn’t pin point what was wrong yet but they strongly felt that our baby had a fatal or incompatible with life diagnosis. We were asked multiple times, throughout several appointments, if we would like to terminate the pregnancy; the answer was always a hard no. We would love this baby and give them all would could, regardless of the outcome, for as long as we had with them. After many appointments, many in-depth tests, we finally agreed to an amniocentesis so we could get a confirmed diagnosis, so we could somewhat prepare for when the baby arrived. After a very long 6 week wait, we were given the diagnosis of Thrombocytopenia Absent Radius Syndrome or TAR for short. 

•Thrombocytopenia is when your bone marrow cannot make platelets. Low platelets means that you can suffer from mild to severe hemorrhaging, because the blood is not able to clot or its own. 

•Absent Radius- typically kids with TAR are missing the bone that connects their elbow to their wrist and in some cases, they have no arm bones at all.

This syndrome is extra rare and can come with multiple anomalies like severe heart and kidney issues, brain hemorrhaging, GI issues, milk protein allergies, and 30% born with TAR have clubbed feet.

We, of course, were devastated by this diagnosis. Nothing ever prepares you to have a child that will be medically complex and physically fragile their entire life. But, we knew that we would love this baby regardless and give them everything we could so that they could be successful in life. 

It wasn’t until birth that we knew that Hutt didn’t have any arm bones at all- his hands are at his shoulders. He also is in the 30% with club feet. The correction process for that is very daunting but we are thankful that his heart and kidneys grew perfectly, without any issues. 

Hutt is amazingly strong, resilient and just the most hardworking little guy. Seeing him work so hard on a daily basis to do what comes natural to most people is incredibly inspiring. The way that he figures out how to adapt and do things his own way is remarkable. Life will always come with big hurdles for Hutt, but he is just takes life in stride and doesn’t let anything hold him back. He’s an inspiration to everyone he meets and just shows the world that despite his disability, it doesn’t stop him and never will. He’s destined to do BIG things in life. I always say that extraordinarily different is extraordinary; and he is just that. He is EXTRAORDINARILY amazing!

After suffering several miscarriages and a high-risk first pregnancy, when I found out that I was pregnant with my second child, I was absolutely elated, especially when we found out it was going to be a girl!  Our son would have the opportunity to be a big brother.   We were optimistic that the second time around would go much more smoothly than the first because we took all the necessary precautions and had done it before so now we were experts…wink, wink.  We very quickly found out that would not be the case.  We did all the early testing, which all came back negative.  At my 20 week appointment, I was told that my baby was not as big as she should be and that could mean either I wasn’t as far along as they thought or she was not growing as she should and may not survive.  They sent me for further examination and after about a 6 hour ultrasound and at least 5 different doctors, I was told that they believed that she had skeletal dysplasia and the concern was that her lungs would not grow enough to support her lungs and she ultimately would suffocate to death.  Of course when I was leaving they told me that nothing was “certain” and don’t google it.  Obviously I did and was devastated at the news.  After shutting down for days at the though of losing my precious baby, I decided that they were right in the fact that nothing was certain and she deserved me to be all in, so that’s what I did.  At this point I was only seeing high-risk doctors and continued to get scans for several weeks.  Over those several weeks, the scans led to even more questions as more “red flags” or indicators kept appearing.  The doctors kept telling us that there were several anomalies, but had no clue how they were connected, and that there was still a possibility that she could be born completely healthy.  They were almost certainly able to confirm the presence of Craniosynostosis, but we would have to wait until birth to actually diagnose.  They also spotted white spots on her heart, a disconnected top vertebrae, and of course the short limbs which led us to this place to begin with.  I agreed to have an amniocentesis performed where they did a skeletal dysplasia test and a full chromosome micro array panel so they might be able to find what was going on.  The results of the micro array panel came back negative, which led the doctors to believe it was most likely skeletal dysplasia.  I received the results of that test on a Friday night and was told the test was negative.  My hopes were that she may possibly be a completely healthy little girl.  Fast forward to Monday (3 days later) and I went to have my second non-stress test done.  Her heart rate was all over the place so they sent me to the hospital to be monitored for a longer period of time.  To my complete and utter surprise, I delivered her just 2 short hours later at 33 weeks, 3 days.  She was rushed off to the children’s hospital since they still were unsure of what exactly was going on.  That night, there was a revolving door around her bedside with all the specialists gathering any information they needed to determine or rule out any possibilities.  My husband and I were also asked to get another genetics test done but would not know the results of that for a while.  We were feeling good about how things were going, especially since she did not have to be intubated at birth and was maintaining her sats well.  The doctor even told me that he thought at most she would be in the NICU for about a month/month and a half.  During that time, the doctors confirmed that she did in fact have bilateral Craniosynostosis and was also diagnosed with an ASD, VSD, and a bicuspid aortic valve.  Even with those issues, she was still considered the “healthy baby” in the NICU.  At about 2 months old, the genetic testing came back and confirmed a diagnosis of Trisomy 9 mosaicism, which is why nothing showed up on the micro array panel.  I again was devastated.  There was very little information about Trisomy 9 and it appeared that what information there was, may not tell us much about her.  As we progressed on with our sights on home, we immediately were shut down as she struggled a great deal with feeding.  After weeks of many attempts, we made the daunting decision to proceed with a g-tube.  After all, we wanted to go home and it could always be removed.  Still with our sights on home, we were beginning to see concerns with her need for oxygen, not so much the actual oxygen, but the flow.  Again, we began the rounds of doctors and trying to determine what was going on.  ENT officially diagnosed her with severe laryngomalacia.  She had several procedures to try and correct the issue, but all were unsuccessful as she was still so tiny.  The issues continued to persist which led us to another difficult decision on her getting a trach.  Again, it was not the easiest decision but we knew it was best and that too could be removed.  After 164 days in the NICU, she was transferred to another unit where we would learn how to care for her at home.  There we ran into additional issues.  After being there for about a month, it was brought to the doctor’s attention that she was exhibiting apnea.  The doctor ordered a sleep study that night and the next day she was immediately put on a ventilator.  We spent another several weeks/months trying to adjust the settings to accommodate her tiny body.  After an additional 90 days in the transitional care unit; with a total hospital stay of 254 days, my “healthy” baby was able to breathe the fresh air as she headed home.  As of today at 6 years 3 months old, she is still g-tube/trach/vent dependent; is still followed to monitor progress with her Craniosynostosis after having brain surgery at 1yo; wears hearing aids and glasses (when she doesn’t rip  them off); wears AFOs to strengthen her legs; is non-verbal; still has 3 heart defects; and is about the size of a 2 yo.  Even with all that she has working against her, she is absolutely the HAPPIEST little girl ever!!!  She truly touches everyone’s life that has the honor of knowing her!  We are so blessed that God chose up to be her parents!  The journey is long and it takes a village.  I never would’ve made it through all of this without having “my people” to talk to!!  I look forward to being that person for each and every one of you!

 At the 12-week ultrasound Evangeline’s mom was told that she had something called an Omphalocele; which is an abdominal wall defect. There were signs of Trisomy 18, but she was overjoyed when she found out that she was having a girl at 20 weeks pregnant. 

The biggest challenge that her mother expressed was finding doctors willing to treat her daughter once she was born and the diagnosis was confirmed.

Evangeline lived a beautiful and active 3.5 years, went to school, and loved going to the pool and spending time with her family!

Hi, im Lukas. God had big plans for me when I was born.

First, he gave me some extra chromosomes,  so I get to have something they call Down Syndrome,  although there is nothing "down" about it. 

I was also born with a belly ache called a Duodenal Atresia and had my bowels rupture when I was all cozy in my mommys tummy, that was fixed at 3 days old and I have a wicked cool scar to show for it.

Then, when I was just over 2 months old, I got the awesome little thing in my belly to help feed me called a g-tube. 

Eating by mouth made me feel yucky, so it helped me a lot.

When I was 11 weeks old, I finally got to go home and meet my big sister and big brother and the rest of my wonderful family. 

Life was good, but hard, but when I was just 7 months old, I had the 2 holes in my heart closed up. One was a PDA and the other was a VSD. I felt so much stronger after those were fixed.

I couldn't help but wonder if God made me special, why did I have these little problems. But soon, I realized that I was what some people call a testament.  These little things God gave me not only made me special but also brought special people into mine and my families lives. 

So I proudly rock my extra chromosome and special gtube and am proud of my patched up heart! 

Embrace your differences.  God gave them to you for a purpose!