This week’s blog was written by Sonia Sankoli. Sonia is the Communications Officer at Soft UK, and her son, Dhian, was diagnosed with Trisomy 13. In his honour, we are sharing their story to mark Trisomy Awareness Month this March.
We had waited 4 years for our baby, and when he was born through IVF on 27th October it was the best day of our lives. Dhian Hari Singh Sankoli was perfect in every way- he weighed a healthy 6lb 4ozs and we were besotted the minute he entered the world. The first time we were made aware of any issue was when we tried to feed him. The pediatrician examined him and told us she noticed his cleft palate. We were devastated naturally but little did we know at that moment what more we had in store for us. The doctors explained that they would send off for further tests to check that it was not symptomatic of a wider condition.
Ten days later the doctor had the hardest conversation we have ever had to hear. We had never heard of trisomy 13 until now, and having to hear the condition details, what should be expected was surreal. Along with his cleft palate Dhian had increased muscle tone in his upper body, epileptic spasms, undescended testicles, weak respiratory system, reflux, vision impairment and mixed hearing loss. Because most of the features he displayed were internal could have been why nothing was detected during our pregnancy.
We were both numb, being new parents was pressure enough and then to know our journey will be cut short was even harder to handle especially after waiting so long. He was the first known case at the hospital so this was a learning curve for everyone. The doctors were nothing but supportive though and respected our wishes with how we wanted to approach everything.
Being raised in an Indian family we have both come from quite a sheltered and comfortable upbringing. Nothing even close to this had happened in our family so I wasn’t sure how everyone would react. However our family were nothing but supportive of the situation and seeing the positives for us. Dhian had been sent to us because he knew we would be strong enough to take care of him for as long as he needed us to, and that’s exactly what we all did. After the initial shock we both realised we didn’t want to look back on our time however short it may be as sad, and we wanted to build memories from that moment.
We took him home when he was one month old. We had been trained on all the tube feeding and started training him on the bottle so already he was surprising us and the doctors. The next couple of months flew by with community nurse visits, home help, appointments, check-ups. There was rarely a day we were on our own but we made time to be a family whenever we could. The first time was when Dhian was 6 weeks and we took him to visit Santa. He cried the whole time but we felt so happy doing something as a family.
Sadly we hit a bump in the road Christmas Eve when he had to go in for emergency eye surgery at Great Ormond St. The longest 3 hours of our life were when he was in theatre but he was a little fighter and did really well. We knew the outcome of the operation wouldn’t be positive, but it helped manage the situation and Dhian was still with us. We made sure it didn’t spoil our first Christmas and got to spend it at home with our family like we always thought we would.
The next bump in the road came when Dhian’s spasms got stronger, we were then told by his pediatrician the severity of them, which again wasn’t a great outcome for us. Your inner strength really builds up when you have so many disheartening hospital appointments to deal with. Dhian was placed on steroids for 2 weeks to help control the spasms and that was a testing 2 weeks for us! Though his feeding had improved greatly on the bottle nothing would settle him. He found it hard to sleep (which meant we didn’t sleep!) and was irritable the whole time. We at times took it in shifts so we could regain some energy! But it paid off and for once we received a positive hospital appointment where his ECG scan had shown his brainwaves had almost reset themselves and his spasms were controlled. We were over the moon and felt like such proud parents.
After this we enjoyed what time we had at home in between more check-ups and appointments. He then caught bronchitis and was admitted into hospital where we would remain for the last 8 weeks of his life. He did improve to then catch another infection which would set him back. With his condition it would take him longer than other babies to recover. When we did have good days we got to go home on day leave which gave us all a break. He was the most loved baby on the ward and had all 21 nurses that took care of him over the 8 weeks totally besotted. Over this period he was resuscitated 5 times, but came back strong, surprising the doctors and nurses every time. The last episode however was the worst and prompted the doctors to have the conversation of ventilating him if his oxygen levels didn’t improve.
Inevitably it was Dhian’s decision in the end and he passed away peacefully shortly after his last resuscitation. He put up a great fight but in the end it was his time to go. We miss our dinosaur every day but know that he is no longer struggling and in pain. The six months he was with us were so precious and we look back in such happiness that he chose us to be his parents. We are different people now and because of him have a different perspective on life.
We have been fundraising to help build a new sensory room at the children’s ward where he was taken such good care of to help other children with complex needs continue their development. To date this year we have raised over £18,500 which will go towards all the equipment and refurbishment of the room. We will continue to help the hospital and other children to keep Dhian’s legacy alive. We have also raised thousands of pounds for SOFT UK.