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
