Oaklee
Our story begins at our 20 week anatomy scan. Our Obstetrician-Gynecologist told us that our unborn baby, Oaklee, had a cleft lip and that he wanted to send us to a high risk Ob-gyn for their opinion.Two weeks later we went to see the second Ob-gyn. During the ultrasound scan he never said a word to us. I remember him ending the ultrasound, looking at my husband and I and asking what we had been told was going on. We were confused as to why he was asking this, I told him we were just told she had a cleft lip and they sent us here for a second opinion and to see if she also had a cleft palate. That’s when we first heard the words “Semi-lobar Holoprosencephaly”. The doctor very vaguely explained it to us, telling us that it was a brain abnormality and that Oaklee more than likely wouldn’t be compatible with life.Throughout our pregnancy we were told to terminate our our baby a total of fifteen times, all by different doctors and specialists. This was never an option for us. I just had a gut feeling that Oaklee would be okay. Oaklee is now 5 months old and thriving. My husband Chad and I find ourselves thinking almost everyday how different life would be if we had actually listened to them and terminated our pregnancy. Oaklee is a ray of sunshine to the lives of everyone she touches, we are truly blessed.
In May 2015, after enduring the heartbreak of eight miscarriages, I discovered I was pregnant once again. I was overjoyed, scarcely able to believe the miracle unfolding within me. I attended all my scans diligently, but during the third one, doctors noticed something concerning. Anxiety gripped me as I was asked to wait for a consultant.
When the consultant arrived, he asked gently, "Miss Holmes, have you ever heard of a condition called Holoprosencephaly?" I had not. As he explained the complexities of the condition, all I could hear was that my baby might not survive. Despite being advised to end the pregnancy, I chose to continue and began researching the condition, determined to learn everything I could about my baby's potential lifespan.
With each passing day, my anticipation grew. Discovering I was having a little girl filled me with even more excitement. At six months pregnant, I had to plan the birth and make critical decisions about medical interventions. I requested that the doctors do everything possible to help my baby if she needed assistance.
On February 25, 2016, after an induced labor, my beautiful Kelsie was born at 4:45 am, weighing 6 lbs 7 oz. She was perfect in my eyes, despite having Holoprosencephaly and a cleft lip and palate. I couldn't wait to take her home and start our life together.​
Kelsie
Kelsie required an NG tube for feeding, and I quickly learned to manage it. At three months old, she began having seizures, leading to a lengthy hospital stay for tests. We returned home with numerous medications, and I underwent epilepsy training. Initially, I was frightened to take Kelsie out due to her seizures, but eventually, I refused to let that fear hold us back. As we navigated this journey, we discovered Kelsie also had a heart condition, necessitating more tests and hospital stays. She was cared for by the skilled teams at St. Thomas Hospital, Lewisham, and Great Ormond Street. During particularly severe seizures, we spent five weeks in the hospital. Despite the numerous challenges, we created beautiful memories together—trips to the seaside, visits to parks, and attending sensory classes and playgroups for children with complex needs. Connecting with other parents in similar situations provided a sense of community and solace.Kelsie brought immeasurable joy into my life. She made me laugh, cry, and smile. I call her my miracle baby and would not change a single moment of our time together. She was precious, and her presence filled my life with love and happiness.On January 10, 2018, Kelsie gained her wings. Her worsening seizures put too much strain on her heart, and she developed sepsis. My life feels achingly empty without her, and even now, three years later, the pain remains. I miss her every day. I spend time at her graveside, talking to her and playing her favorite songs. Kelsie will forever be in my heart and thoughts. I feel profoundly blessed to have had my beautiful girl for 22 precious months. She is now my beautiful angel Kelsie.
Isaiah
We were 20 weeks pregnant when our Obstetrician-Gynecologist noticed something unusual with Isaiah's head during an ultrasound. Unsure of what it was, he referred us to a fetal medicine specialist in Cincinnati, Ohio.
At 22 weeks, we heard the words Alobar Holoprosencephaly for the first time. As I lay on the examination bed, the doctor repeatedly urged me to terminate the pregnancy. I firmly responded, “We are not doing that.” She even had the nerve to suggest we shouldn’t have named our baby.
After this appointment, we returned to our regular Obstetrician-Gynecologist and shared what the specialist had said. He supported all our decisions and reassured us that Isaiah’s fate was in the hands of a higher power.
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We were then referred to OSU, where doctors echoed the previous prognosis. They told us we would be blessed if our baby made it past birth. Of course, they had to convey the gravity of the situation.
Dad and I prepared for the worst-case scenario, just in case.
At 38 weeks and one day, I delivered Isaiah via emergency C-section. The pediatrician, rushing to the bedside, arrived just in time to hear Isaiah take his first breath on his own. Despite the doctors' continued bleak outlook, we held onto hope.
Today, Isaiah is five years old, demonstrating every day what a true miracle and blessing he is. We feel incredibly fortunate that he has defied expectations and shown doctors the strength and resilience he possesses.
At our 36 week scan we were told something looked abnormal with our baby's brain but Consultant wasn’t sure what it was. He informed us our baby would need a brain scan when he was born and because of this it was decided that I should be induced at 38 weeks.
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When Thomas was six days old, an MRI scan showed that Thomas had Lissencephaly - a rare life limiting brain condition. We were told it was unlikely that Thomas would live past his second birthday, yet here we are having already celebrated four incredible birthdays with Thomas.
Along with Lissencephaly Thomas has complex epilepsy, developmental delays and needs around the clock care. The hardest part of our journey is definitely managing Thomas' seizures, at times they can take over so much of his life but he is never short of a smile.
Thomas is our ray of sunshine and always comes back fighting. He is adored by his two big brothers who love to help take care of him. We appreciate every second with Thomas, and continue to make as many memories with him as possible.
Thomas
everyone, along with his muscles! He more recently has began eating his lunch orally too, which is such a massive achievement for him!!Raif is now 5, also now diagnosed with Autism and awaiting an ADHD diagnosis. But he can walk, he can talk, he can also run in short bursts!!! He is also absolutely incredible at shooting hoops and throwing stones and balls, his aim is pretty awesome!
He wears an AFO and has Botox surgery to help him, he works so hard each and every day with physio! Life can be tough for him & he struggles with a lot of pain & struggles with many daily tasks, but he is doing it! He is achieving, actually he is smashing it out of the park!
Raif is incredible and has the ability to make everyone smile. You can not help but to fall in love with him, he is amazing. He has changed our life in ways we never thought possible and we have become better people for having Raif teach us.This journey has been far from easy, there have been many hurdles and heartbreaking moments. But every second of this journey has been worth it and we wouldn’t change a thing. We feel incredibly blessed to be Raif's parents, we will continue to let Raif lead the way and support him always. Our fierce, brave, determined boy was sent here for a purpose and that was to make the world a better place and boy is he doing that.
Raif
Raif is our beautiful 5 year old son. We had a very healthy pregnancy with no concerns & he was growing perfectly. When he was born on July 2nd 2019 he looked perfectly healthy & just a bundle of perfection. The first few weeks we spent in the newborn bubble & adjusting to an extra little person in the house, everything seemed just how it should be. When Raif got to 4 weeks old we really started noticing some problems mainly with his feeding, he just couldn’t drink milk from the bottle and would scream after 1/2 oz. He only latched on me once and then couldn’t latch again - we were growing increasingly concerned.
We went back and forth to the doctors and the hospital to express our concerns, yet no one would listen. We heard colic, reflux, constipation etc… fast forward to 15 weeks old Raif was extremely unwell & malnourished due to the lack of feeding, we refused to leave the hospital until he was properly observed as we knew there was something wrong with our baby. We again heard GERD and he was fitted an NG tube for feeding and lots of medication for GERD. That was it, with a full tummy we finally had a happy baby that genuinely smiled for the first time! We thought his oesophagus would heal and then he would be able to drink again like we were told.
However I still wasn’t convinced and began to watch his every move. I quickly noticed he never used the left side of his body, his arm just hung by his side. After expressing my concerns with his consultant who told us he wasn’t worried at all, we pushed for an MRI. It was then on January 31st 2020 we discovered the real truth behind his struggles. We were told Raif had a large chronic cystic Encephalomalacia, which was the result of a stroke he had suffered between the second & third trimester, this resulted in him having Cerebral Palsy. We were told that he may never walk, talk or develop as he should, it all sounded like his future looked bleak. However Dale and myself knew otherwise, our son was undeniably determined and would achieve all he set out to do.
We put all of our time into researching the best ways to help him and focused our energy on doing the best for our son. He began physiotherapy very soon after his diagnosis & we worked tirelessly with him every day! We were not going to give up! Raif achieved milestones!! He began sitting up just before he was 2 years old and took his first unaided steps at 2 1/2 years old!
Just before his second birthday he had his Gastrostomy surgery and this enabled him to do so much more! We also began his blended diet journey and he started to grow and develop beautifully! He has a button now which he is super proud of and tends to show it off to
I'm Ada's Nanny, I was so excited when my Daughter Ebony told me she was expecting, especially because she was told she probably would never conceive due to PCOS, so that in itself was a miracle.
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On the 18th of January 2021 Ebony asked if I could take her to her scan as her partner Luke had Covid, I was overjoyed at being able to see my Granddaughter for the first time. During the scan the room fell silent, I remember looking at the image on the screen and thinking she looked like a kitten! Little did I know this was because she had a cleft lip. On the drive home we were tearful but silent. After several more scans and tests we found out Ada also had a cleft palette and a rare brain malformation, Holoprosencephaly. We were told she probably wouldn't be compatible with life and they suggested an abortion. I told Ebb that Ada had come this far, she was sent to us for a reason and was our miracle. We were then told she may not even survive the pregnancy or birth, and if she did she may only live for an hour. My heart broke for my Daughter and her partner and I felt useless because I couldn't fix the pain and anguish they were been going through.
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On the 6th May 2021, Ada arrived! I think I held my breath for that first hour thinking if she makes it through that then she will fight to stay where she was born to be. She was the most beautiful baby girl I had ever seen and she has really has continued to surpass
all the odds to thrive and grow. It's not been an easy journey for
Ada
for her, she's now three and has had her cleft lip fixed, and just had a gastrectomy, meaning she's no longer tube fed through her nose (the little devil kept pulling it out!) The tube is now directly into her stomach. Ada now also attends nursery and loves it! We are unsure on what the future will be for her, she may also get her the cleft palette fixed but for now that’s not possible.
Ada is our world, our warrior and our miracle.
Hannah
We welcomed our beautiful little girl, Hannah Faith, into this world two days after Christmas last year. This sentence seems simple, but it carries a lot of wonderful weight to it. Our daughter was diagnosed prenatally with a brain condition called alobar holoprosencephaly. In lay terms, this essentially means that the center line that separates the left and right hemispheres of her brain did not form. We were also told that she had a symptom of the alobar holoprosencephaly called cebocephaly. This means that she would be born with a non-patent single nostril and close-set eyes. We were told by several doctors that Hannah would most likely be miscarried or be stillborn. The statistics back that up as well, showing that 1 in 8,000 to 1 in 16,000 are born alive, and of those born alive, most do not survive past their first six months of life.
God had other plans for Hannah and provided that peace that surpasses all understanding when I peaked over the medical cloth to see Hannah make a cough, spitting out some fluid and then taking a breath in. She was baptized by Pastor Shawn within minutes of being out of the womb, so we are confident that when God does call Hannah home, that she will be forever in His presence.
Hannah is now eight and a half months old, and we get to celebrate each day that we are given with her. After discussing with the doctors, my wife and I elected to have a tracheostomy performed on Hannah as well as a feeding tube placed into her stomach. The tracheostomy was performed in order for her to get warm, humidified air into her lungs as she lacks the ability to accomplish this through her nose, and the feeding tube in her stomach makes it easier for her to be fed due to doctor’s concerns with her ability to swallow normally. She is also breathing with the assistance of a ventilator. She also lacks the pituitary gland in her brain that controls her hormones, so she is on medication to give her the cortisol that she needs. She is also prone to having seizures, a common symptom of holoprosencephaly, so she is on medication to help control those. We were first able to bring Hannah home from the NICU at Dallas Medical City in June of this year, and we were overjoyed. Four short days after we brought Hannah home, she developed a urinary tract infection in conjunction with a respiratory infection which caused a plug to form in her tracheostomy tube. After several unsuccessful attempts at resolving the issue, she had to be airlifted back to Medical City as her oxygen saturation had fallen dramatically. She then had to spend several weeks in the hospital letting her lungs recover from the infection. We were then able to once again bring Hannah home. After ten days of having her home the second time, she once again developed the same type of respiratory infection that she previously had. We then took her to Children’s Hospital in Dallas due to a recommendation from the respiratory therapist from the company who provides us with all of the supplies for Hannah’s care. After another few weeks of letting her lungs recover, we were able to once again bring Hannah home. She has been prescribed some antibiotics that can be given semi-routinely as a preventative measure for her proneness to getting urinary tract and respiratory infections. Due to her brain condition, Hannah also has difficulty regulating her body temperature as our bodies naturally do.
We have been told by doctors on two occasions that Hannah was not going to survive, and to hold her for awhile until she passes away. However, God had a different plan each time. He has put a fighting spirit in Hannah, and she has continued to bounce back from each setback. She has strengthened our resolve to be a voice for her and forced us to lean into our faith and dependence on our Savior. He is our refuge, and He has provided all that we have needed. He has richly blessed us with countless aid from our families, church family and friends, expertise, problem solving, assistance, and training from doctors and nurses, an employer who has been flexible, and our other two kids who have kept us laughing and enjoying each moment with them. We are beholden to them all, and we will forever thank God for them.
We do not know the amount of time that we will get with Hannah on this earth, but we know the One who holds her future. God has continued to amaze us with the work He has done through Hannah. It is nothing but miraculous that He is able to speak such volumes through a child who may never utter words, make people run to Him through a child who may never take steps, and breathe faith into the flesh through a child who may always need assistance breathing. He has been a light unto our path, and we trust in Him to carry out His will for Hannah’s life as well as our own. A great comfort to us is the fact that we have a Father in heaven that is able to not only be ever-present with us, but also able to sympathize with us. He knows the depths of our struggles beyond our ability to grasp. Through Jesus’ resurrection, we know that God worked His plan for our good and for our salvation through his son, Jesus Christ. We know that God will work His plan for Hannah for her good and for our good. His will be done.
We ask that you please keep Hannah in your prayers. We ask for prayers of strength for her, prayers of health for her, and prayers that she will continue to be a light unto the world for her Savior.
Our story starts years ago because it took my husband and I around 6 years to be able to get pregnant. When we first got pregnant we were the happiest we had every been. We were so excited and started buying and planning all the baby things super early. I had never felt happier and better back then, until our anatomy scan at 18 weeks we were told that our unborn baby boy had "excessive fluid around his brain".
Our perfect world started coming apart. We were so scared and worried and two weeks later we were sent to a high risk Doctor that gave us the diagnosis of Holoprocencephaly. I still remember his cold eyes looking and us and telling us "your baby has Holoprocencephaly, and the worst kind." I still remember wondering what that meant. I felt like he was speaking another language. I will never forget how cold he was and how easily he said "your baby is incompatible with life. There is no hope for him. He is missing most of his brain. He won't be able to breathe or do any vital functions. You need to terminate". I feel like it was an out of body experience, I do not remember much of our conversations from there on but I do remember clearly saying "termination is not an option for me and never will be". He looked straight at me and said "ok, don't forget there are really slim chances of your baby making it to full term or your baby making it to birth alive".
The first week I felt like I was grieving my baby before he even passed away but one week later I clearly remember talking to God and begging him to please save my baby. At the same moment I felt like he was hugging me and told me "don't worry, everything will be ok". From that moment on I put a smile on my face and trusted him that my son was going to make it. I had no doubt about that.
I had moments where I was scared, especially after my Doctor appointments because he kept telling me every week that I needed to terminate and that my baby was not going to make it but I quickly reminded myself each time that God was in control.
The weeks passed by and I started developing severe preeclampsia. I was hospitalized for a while and at 35 weeks our son was born though emergency c-section during one of worst high blood pressure moments I had. My birth was quite traumatic. I thought I was going to pass away, I felt like my heart was exploding and giving up on me but all I remember is my sweet OB telling me "Michelle I'm sorry but we need to put you to sleep now and do a stat c-section". I was alone and scared and called my husband as I was bring rolled to the OR. 3 minutes later from my call our Elijah was born. For 3 days I was not doing well enough for them to allow me to go visit him in the NICU, that was the hardest time for me because all I wanted was to see my baby. But I was assured by my OB that he was born crying and that he was breathing all by himself.
At 4 days old Elijah had brain surgery to cure his severe Hydrocephalus and from that day on he has been doing better each day. Elijah is now 2 weeks away from being 2 years old and can breathe and eat on his own. He is the happiest little boy you will meet, he has very strong opinions and will have everyone fall in love with him. He has the sweetest eyes.
This journey has taught us so much that I would not even know where to start, but my favourite part is when people that know him well tell us how much our Elijah changed their lives and their faith in God. Our boy is such a miracle and we are forever greatful for him. Some days come with more challenges than others but we would never want to change him because he is so perfect for us! Overall, our lesson is that God is the biggest physician of them all and nothing is impossible for God.
Elijah
