“She is such a joy to be around, and it is a privilege to be her mother.”
Elisabeth Weiland, 01/28/2018, Trisomy 13, Provo, UT
Elisabeth is a very happy baby who brings a smile to everyone who holds her. She is currently almost 10 months old. She was diagnosed with Trisomy 13 at 32 weeks gestation. She surprised the many specialists in the delivery room by breathing on her own and opening up her eyes to look at Mom. She also shocked everyone on the other side of the spectrum because has an extreme scalp defect, which did not show up in ultrasound. Her brain was completely exposed at birth, and she was leaking cerebrospinal fluid. Although none of our team had seen or heard of a case of cutis aplasia this severe before, we had a wonderful neurosurgeon and plastic surgeon perform a miracle on her head. She hasn’t needed any other surgeries, except for a G-tube.
Most of her organs are in pretty good condition. She has a lot of seizures which sometimes cause her to stop breathing. She is on several medications to keep seizures under control. They work rather well unless she is sick. She is also on prophylaxis antibiotics to prevent UTI’s.
She has 6 adorable little fingers on each hand. She is such a joy to be around, and it is a privilege to be her mother. She loves holding stuffed animals and playing with toys. Her favorite thing to do is play with her tongue or reach for Dad’s beard. She also loves her brother and rabbit.
“We love her already and will not stop trying to find someone, some facility, who will believe with us!!!”
April Sollenberger, Trisomy 18 and CDH, 02/25/2019, Orrtanna, PA
So yay!! We were so excited!!! Were pregnant with baby 11!!!! Going in for an Ultrasound has always been one of the most exciting days of my life!!!!! Until, it took almost 2 hrs!!! I told my husband, she either has the worst bed side manor ever, or something is seriously wrong, as she proceeded with cold silence!!!!
fast forwarding to now, 3 weeks later, visits to MFM, and our local childrens hospital, we sit feeling helpless!!! We have been told that our baby girl is “incompatible with Life”
Yet we read of babies surviving with both Tri 18 and CDH!! We have found near nothing with a baby who has both! Though our baby seems to us to be doing so well in the womb!! Her heart is complete without defect, Lungs present and moderate, both kidneys functioning, Amniotic levels good, Brain only neg. is the Choroid Plexus cysts. As for the hernia, (left side) it is her stomach, intestine section, and liver. Despite the findings, we feel that every life is valuable, and should be fought for, until there is no fight left. We feel she is worth it!! We love her already and will not stop trying to find someone, some facility, who will believe with us!!! Please share our story and help us find help before its too late!! We are near 23 weeks now. And our local facility is telling us the humane thing to do is comfort care and hold her while she dies!!! This is not acceptable to us. It doesn’t feel human, to not exhaust all efforts! We believe that God has a plan for our baby a plan to give her life and purpose!!!!
“…I was free to enjoy my time with her in the womb and not be consumed by worry, fear, guilt, and grief.”
Aspen Alfred, Trisomy 18, 07/11/2014, Spring, TX
Aspen was our ninth child and was due the first week of September. Prenatal ultrasound showed possible issues with her heart and small size but we were unwilling to have test to confirm any diagnosis because the information would not have changed any of our plans for her birth and life. I’m so grateful that I didn’t know what her diagnosis was because I was free to enjoy my time with her in the womb and not be consumed by worry, fear, guilt, and grief. My ignorance was truly blissful. She arrived six weeks early and was taken to the NICU. She was stable on CPAP and oxygen. By the second day they noticed her abdomen was distended. She was immediately transferred to Texas Childrens Hospital for an evaluation that turned into an emergency surgery to close the bowel perforation that was discovered along with many other congenital anomalies. At four days old her FISH test confirmed her diagnosis of Trisomy 18.
“I’ve learned to accept the diagnosis in the past four years but still it can be hard…”
Alishba Kazmi, Partial Trisomy 13, 06/04/2014, Winchester, VA
Our story starts the day Alishba was born. All of the anatomy scans were normal during the pregnancy. I had two children from before who were fine so there wasn’t any reason to believe that there was something wrong. The first sign was that she had an extra digit on every limb. My husband didn’t even tell me until the nurses took me to our private room. Obviously I was in awe. The second sign was that she wasn’t able to swallow milk without choking on it. The next morning, they gave us more devastating news. The front suture of her skull was closed, which meant she would need surgery before she turned one. It just felt like a fist fight would have been less painful than the punches that we were getting left and right. The only thing we knew beforehand was that her kidneys had a little bit of water in them but apparently that can happen even if everything else is ok. They decided to do some genetic testing and two weeks later we were told that she was unbalanced because she had a partial extra chromosome 13. The doctor looked into our eyes and told us point blank that there were going to be severe delays. It’s moments like these when you know that your life is never going to be the same again. It felt like someone shot me in the heart. Maybe life was too smooth before and this just had to happen because we’re much stronger and braver than we thought. I’ve learned to accept the diagnosis in the past four years but still it can be hard to acknowledge the reality of our life now. She went on to have her cranial reconstruction when she was one and had to get a g tube when she was nine months old. She can crawl but is still getting therapy for walking and maybe one day, talking. Both of these skills seem far fetched right now but we try to be hopeful everyday. The question is why did this have to happen and I’m constantly searching for the answer and most of the time I tell myself that this is a test and it’s these types of challenges that make us stronger in life. There are times when you don’t want to do it anymore and you want to give up but that’s the moment you have to push yourself even harder.
“Olivia approaches everyday head on and ready to explore.”
Olivia Kopecky, Trisomy 13, 07/11/2009, Schulenburg, TX
Update: 11/19/2018 – Our beautiful Olivia was undiagnosed until birth. She is the most amazing person I’ve ever known. She has so much personality, she’s loving, funny and determined. She has exceeded all expectations, she is limitless and fearless. Olivia approaches everyday head on and ready to explore. Olivia can walk unassisted, and gets around rather well although she is visually impaired. Olivia is nonverbal, but can say “mama”, “dada”, “up” and “more”. We have had some surgeries for bilateral polydactaly and to correct TOF and VSD. If you would like more information on our journey, please feel free to reach out to us.
Original text: Our beautiful Olivia was undiagnosed until birth. She is the most amazing person I’ve ever known. She has so much personality, she’s loving, funny and determined. She has exceeded all expectations, she is limitless and fearless. Olivia approaches everyday head on and ready to explore. Olivia can walk unassisted, and gets around rather well although she is visually impaired. Olivia is nonverbal, but can say “mama”, “dada”, “up” and “more”. We have had some surgeries for bilateral polydactaly and to correct TOF and VSD. If can and support or if you would like more information on our journey, please feel free to reach out to us.
Elise Sherry, 02/01/1992, Trisomy 18, Petaluma, CA
“…we wouldn’t change the path God has given us to journey on. “
Elise Marie is our fifth daughter and has a brother one year younger than her. She is also aunt to six (and soon seven to be) nieces and nephews. She wasn’t born with major lung or heart problems but is tube fed. She had seizures when she was younger but outgrew them. She did have one last year due to a severe urinary tract infection which was due to the high fever. Our biggest change with caring for her happened after that; she doesn’t routinely urinate on her own. We are now having to catheterize her 3-4 times a day.
This 70 lb., black hair, blue eyed lady has been a special love of all our lives. She has a peace that has been such a comfort and has taught all of us how to love unconditionally. Our children have benefited greatly by knowing and caring for her and she has been a unifying glue that drew us closer to one another.
Different has been good with it’s blessings and challenges; we wouldn’t change the path God has given us to journey on. His ways and thoughts are so much higher and His rewards are deeper than we could have imagined.
Happy Birthday to our precious 26 year old daughter!
“Every wish we had for Eli came true.”
Elijah Spencer Holt, Full Trisomy 18 and Klinefelter Syndrome, 6/15/2017 to 6/21/2017, Spokane, WA
Elijah was diagnosed with full Trisomy 18 and Klinefelter syndrome after our 20-week ultrasound showed many markers for a chromosome disorder. After continuing our pregnancy care at a maternal fetal specialist our only goal was to have the chance to meet our little boy. Because I also had polyhydramnios we expected to go into labor at any time. We also had the daily fear of him dying in utero. Thankfully Elijah was always very active and I didn’t have to wait long to feel him move if I was worried.
I went into labor on my due date and Eli was born vaginally almost 24hrs later. We chose to not have any monitoring during labor but much to our relief I could still feel him moving around between contractions. We chose to have many family and friends on standby at the hospital so all who wanted to could meet him.
Elijah came into our world alive and crying. He was 5lbs 4oz and 19 inches long. We immediately gave him oxygen but no other interventions were needed at that time. We chose to stay in the hospital a few extra days as we learned how to take care of him. He had a few apnea episodes where we thought we would lose him.
3 days after birth we took him home on hospice. Every wish we had for Eli came true. We were even able to spend some time outside in the sun. 5 1/2 days after birth Elijah slowly got more and more tired. He died peacefully in my arms with my husband by our side at 1:40 am.
Our faith in Jehovah’s promise of a resurrection has helped us cope with the loss of our dear son and we can’t wait to see him again soon on a paradise earth.
She had a smile that won the hearts of everyone who knew her! She was one of the biggest blessings of my life!
Grace Lundt, Full Trisomy 13 / Dandy-Walker Brain Malformation, 04/10/2007 to 02/25/2012, Little Elm, TX
Grace Noel Lundt was born on April 10, 2007 and is our special gift from God. She was prenatally diagnosed with Trisomy 13, Dandy-Walker brain malformation, and many heart calcifications. Dr.’s gave no hope for life longer than five minutes, but our incredible God had other plans!
Grace truly was a miracle baby from the very beginning! The day she was born, God gave such peace, strength, and joy. Many friends and family came to see our special little girl. It seemed like a celebration as the clock kept ticking and Grace did so well. Two days after birth, having no medical intervention, Grace came home from the hospital. Grace’s eyes were shut and we assumed she was blind. She had a small hole in the top of her head and some very endearing toes. She was absolutely beautiful! Her heart was good! She started out eating well, but soon after we were home she started losing weight. This began our feeding tube process. God brought us through a lot of difficult days with those struggles. Grace received a GJ feeding tube which worked well for her growth. After time we struggled with her tube site draining and her poor skin gets so sore, but we just keep doing our best to keep it well. God brought Grace through aspiration pneumonia from her first NG feeding tube. He also put her in the hospital at the right time when she got mono. Her feeding tube had plugged and we ended up in the ER. They found her counts were all off and into the hospital we went. At seven months an MRI was done of Grace’s eyes and brain. There was no sight possible, but God had completely healed her brain from the Dandy-Walker! What a miracle! Soon after that Grace started having seizures. She had myoclonic jerks. After that her seizures progressed into different forms and we had difficulty finding the right medication. We had time frames where they were somewhat controlled and other times where she had them up to 30 or 40 a day. As for Grace’s eyes, we started the process of getting prosthetic eyes so that her facial growth would remain normal. For the first several months they were just clear plastic shells, but at about 15 months Grace had her first set of painted eyes. We chose a deep blue color like Ethan’s. (Everyone had always commented that Grace looked like Ethan.) The ocularist did a beautiful job! Soon after Grace’s first birthday, she started a new seizure medication, Clonezepam. It increased Grace’s secretions and made her always have a little pool of water in the bottom of her throat. This caused many worries about her respiratory status and whether she would aspirate again. This medicine also relaxed Grace so much that she was so drowsy all the time. In the progression of taking the medication and her seizures finally seeming controlled, we did not realize we were losing our little girl in the process. Grace did not have seizures often, but when she did they were changing into longer seizures. Grace also started having non-stop Urinary Tract infections. We would have her on an antibiotic for one and she would get another one. After a month or two trial time, we took Grace off the Clonezepam and we got our little girl back! Her gurgly throat was no longer a problem! She was smiling and crying again! She got so much stronger, holding her head up at times. It was wonderful. Still struggling with the UTI’s and other discoveries made in trying to figure them out. We had testing done on Grace’s bladder, kidneys, and spine. We found out that her bladder refluxed a little, but unsure how much. Her kidneys were not healthy and needed a lot of prayer. They are enlarged. There is some water in them that does not belong there. The tissue is not good at all. There is supposed to be an obvious difference between the inner part and outer part when you look at them, and Grace’s all looks the same. The Dr. said that she must have some good reserve that she is using otherwise she would not be growing as well as she was. The Dr. said we were headed for kidney failure eventually and her job was to get the UTI’s stopped to keep the healthy part of the kidney healthy. That would prove to be an ongoing battle. We did an MRI of the spine and found that Grace’s L4 was too low. We would soon see a Neurosurgeon to see if there is a possible tethered spine or tumor. Her spine also curves to the right. The Urologist feels these spinal issues could be putting pressure on the kidneys and bladder causing these problems. God was so faithful in His loving care of Grace and our family. Our move to San Antonio was good for Grace’s care. She is getting exceptional therapists and services here. Our doctor also heard a heart murmur that had not been diagnosed. Grace was now two years old when they discovered that she needed a coarctation of the aorta. The procedure went very well and held well! Grace also had a tethered spinal cord release surgery at the age of two. We changed her GJ tube to a G-button with a nissen wrap. Both surgeries went very well and the acidic drainage on Grace’s stomach finally stopped and her stomach healed. At age 3, we moved to Albuquerque, NM. Some people thought we weren’t making a good move because healthcare specialists in NM were not the best. I was told that the only good specialist they had was the Urologist. I just had to smile, because that was the main specialist we still needed. Once again, God had paved the way to provide exactly what Grace needed! Through her numerous UTI’s, pneumonia, RSV, her colon perforated requiring immediate surgery, and many other health complications God was always faithful to get her the help she needed at the perfect time. We were still able to go on trips, visit family, go to church/Sunday School for Grace, participate in field trips with school. She made great progress in her PT, OT, and Speech. She had a smile that won the hearts of everyone who knew her! She was one of the biggest blessings of my life! God chose to take her home to heaven in February of 2012, just two months short of her 5th birthday. We had decided to not treat every UTI unless she had a fever because Grace was becoming so resistant to all the antibiotics. The week before I had suspicions that she had a UTI, but then it seemed to clear up. At this point we were cathing her five times a day to make sure her bladder got drained fully. Then one morning she started spiraling down quickly. She had a fever and her oxygen level was down. We put her on oxygen and rushed her to the hospital. It seemed to be the beginning of another short hospital stay, get her on the antibiotic and get her home!! By midnight, the UTI had gone septic and was attacking her heart. She crashed three times within a couple hours. It became evident that they were not going to be able to fight off this infection. They kept saying that they couldn’t catch up to it. We brought in Grace’s three siblings early that morning to say their goodbyes, and right after they left the room Grace went from my arms straight into the arms of Jesus. I have never known such loss, but through it all my God was faithful!!
London (Rose) Bairfield, Trisomy 18, 07/12/2015, Ofallon, IL
God planted this little Rose so it could be watered and nature.
It was the Fall of October when I discovered my sweet baby London(Rosie) would be the greatest gift from god to our family. Rose, despite her hardships such as subchronic hemmorages, low birth weight, cardiac Cather and nurses doubting her surviving birth, Rose preserved through her hardships. At times she utilize a post on meter, which monitors her oxygen levels, feeding tubes if needed, and oxygen tanks. Now at age two, Rose’s mobility is limited due to her lack of muscle control but with the help of charities who donate equipment, she’s able to utilize a wheelchair custom made for her and a device by Upsee which able her to stand up right. I never feared being a parent of a Trisomy baby girl, it was more so how health providers negative perspective about Trisomy 18 lives weren’t compatible with others human being is what broke my heart. Little that they knew that Rose was born into a family of God fighting people who don’t leave anyone behind. God planted this little Rose so it could be watered and nature. Rose is the best thing that ever happened to our family.