It was on the 27th October 2018 when I first met Jack. Jack’s mum Natalie, booked in for his first Christmas Session and what a beautiful session it was. At the session Natalie mentioned Jack had a hypoplastic thumb, which means his thumb is under developed. Apart from being aware of it, I didn’t do anything differently and you’ll see in his photos below that this was in no way bothering him at all.
I was lucky enough to see them both again in March 2019 as I captured some Mother’s Day images for Natalie, in May 2019 for Jack’s 1st Birthday photos and again in November 2019 for Jack’s Christmas photos. During these sessions I learnt a little bit more about Jack and some of his ongoing health conditions. It was always clear though, through each session, that no matter what this sweet boy was dealing with, you’d never know by the way he smiles.
When Natalie & Jack were nominated to win a free Family Session I absolutely knew this was my opportunity to give back. With Mum’s permission, I asked if could write a blog on Jack and how his little life has been to date.
I wanted to give Natalie an opportunity to speak about Jack and the journey they have both been on and was so happy she agreed.
The information noted below is taken and adapted from Mum’s words and will give you a real insight into their journey so far:
“On October 28th 2017 I took a pregnancy test and it showed positive, an overwhelming feeling came over me in that second and I just knew I couldn’t wait to be this little babies mum. 2 days later I started bleeding and ended up in hospital to check what was going on. I was severely dehydrated, but baby’s heart was still beating. What a relief. This was just the start of the scariest journey of my life.
12 week scan went well even though I was so ill, I was then diagnosed with Hyperemesis gravidarum, which is sickness all day long, fainting, weight loss and severe dehydration. It wasn’t the best start but my baby was still doing well in the scans.
Fast-forward to my 20 week ultrasound scan and my world came tumbling down.
The sonographer was spending quite a long time looking at my baby’s heart. She then proceeded to tell me that he had an unusual heart and went to get a second opinion. My heart literally felt as if it stopped at this point. I remember asking her if the baby was going to die and she couldn’t answer me. They both looked over the heart and decided that I needed an emergency appointment with a cardiologist (special heart doctor) who confirmed it was a right sided aortic arch (most people are born with a left aortic arch). After this, we were monitored closely at the Queen Elizabeth Hospital. Soon after, they realized he wasn’t really growing that well and was under the 5th percentile which was really small. I continued with the 2 weekly ultra sound scans and it was then planned that I would have a c- section at 39 weeks for baby’s safety.
Tuesday the 29th of May 2018 changed my life forever. At 11.02am Jack was born by c-section and there was a loud cry from him, then nothing. They quickly rushed him over to the table to give him oxygen. I remember lying there crying because I thought he had died. Eventually I heard a little cry and in that moment I felt unbelievable relief. They put his tiny little 6lb body on my chest and wheeled me to the recovery ward. Literally 2 minutes later, nurses and doctors came in and said they had to take him to ICU because they had noticed something else was wrong.
I was an emotional wreck by this point. I remember just crying and crying. Then 2 INCREDIBLE nurses wheeled me up in the bed to ICU to follow him. I was allowed to hold him briefly and was took to the maternity ward without my baby.
This was incredibly distressing as I was surrounded by mothers with their babies crying and I didn’t have my baby with me.
Later that night I had a consultant come round and tell me they had discovered there were a few abnormalities they had found in Jack’s body and they had to assess them.
Once I had got him back next to me, I couldn’t stop crying. A kind midwife let me stay in a private room because of the situation. So after days of x-rays and blood tests they finally let us home. But this wasn’t the end.
A few weeks later we had a check up, I remember walking into the Glasgow children’s hospital and it was so busy, just walking through it I just heard white noise, like people were talking and rushing about and I was just walking about in a daze with Jack in the pram. Confused, upset and terrified of what the news would be. This is when they told me the results of the tests and it showed all of Jack’s little health issues.
In his heart he has a; right sided aortic arch, a small hole, vascular ring and a murmur. They then proceeded to tell me he has a hypoplastic arm on his left side and stage 4 hypoplastic thumb (which means he will never be able to use/move his thumb), a missing rib, hypospadias penis with his left testicle unfound, scoliosis and a cyst on the bottom of his spine, and slightly webbed toes.
I remember feeling so ill and upset because I couldn’t believe this was happening to my baby. It felt like one of the worst days of my life. The pediatrician then examined him and told me he would need to see a physiotherapist as he was showing some concerning signs.
Three tough months later I did what everyone tells you not to do and Googled his symptoms. I had came across the condition, Vacterl which stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. But was told they had to rule out some other medical conditions first. At this point, Jack hadn’t been diagnosed yet.
After 17 months of MRI, CT Scans, X-rays, and really painful blood tests for my baby boy, they had diagnosed him with VACTERL association. I felt relieved that they finally knew his condition. Up until that point the unknown was so scary and I had no idea why he was born this way, what caused it or what life expectations were.
Although the defects of this disorder are clearly linked, Vacterl is a rare condition and is called an association rather than a syndrome because the exact genetic cause is unknown.
My son is under a pediatrician and physiotherapist at South Bank clinic. He then sees his cardiologist, urologist, endocrinologist, neurosurgeon, orthopedics, respiratory and plastic surgeon at Glasgow children’s hospital (QUEH).
Most of them we deal with on a monthly basis. One consultant I butted heads with right at the start, was his plastic surgeon. My first meeting with him was not a good one. I was already in an emotional state with all of the information I was given about Jack, but this guy broke me. With Jack’s thumb he told me the only option was Politicization surgery, which basically means to take his thumb off and move his index finger into the thumb position. I felt like a ton of bricks had fell on me by this point. I just cried and picked Jack up and walked out of the room. I couldn’t talk after that. I was then called back a few weeks later to discuss what he had suggested and the plastic surgeon referred me to a psychologist because he said I over reacted. I was enraged.
I’ve since had a few 2nd opinions and I’m in touch with one of only a few surgeons in the world who try and save Jack’s type of rare thumb. Dr. SEITZ (Cleveland, America). This has given me a glimmer of hope as to what the future holds for Jack’s thumb.
At the start I was told that he may not walk or hold his head up because of his spinal issues. We didn’t know how his heart played a part in this and what he would be able to achieve. It was a very scary journey at the beginning. But, now with daily physiotherapy, he’s sat up, took his first steps and can run and jump. Looking at him now, no one can tell he has any medical differences.
He is now 19 months and thriving. There’s nothing he can’t do! And to me that is a MIRACLE. From the start, finding out about his different little heart and praying to God to let him be okay and keep growing, to now watching him jump around his gymbaree class with his peers, is indescribable.
Some people never meet their hero’s, I gave birth to mine.”
I know we can all learn something from this amazing little family. To never give up and to be brave.
We also need to realize that no matter how ‘normal’ a person or child may seem on the outside, we have no absolute understanding of the real struggles they may face and the smiles they hide behind.
We are all thinking of you Jack, you are going from strength to strength and it is such a wonderful journey to see. To Natalie, you are a shining star who is brave and a dedicated mum giving your all to your amazing sweet boy. He will always look back on these images with so much love.
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