At her 20-week antenatal scan, Victoria Langford discovered one of her unborn twins had a rare brain condition and was unlikely to survive.
Vicki and her partner Dean were offered a termination but faced the devastating prospect of losing both babies, who they called Patrick and Frederick.
“We were told the damage to Patrick’s brain was so bad that he was unlikely to make it,” said Vicky, from Ilkeston. “When I look back, it hurts so much. If we had a termination, they wouldn’t have been able to save Freddie either. I have always been a believer in whatever will be will be. We didn’t know if Patrick would take a breath when he was born but we decided it had to be his choice. Just because there was something wrong with him, it didn’t mean he didn’t get a chance in life.”
Patrick did survive and although overjoyed, his parents face the daily prospect that they could lose him at any time. Two-year-old Patrick has between 20 and 30 seizures a day and has spent half of his young life in hospital.
“We would need an ambulance quickly and they would take him to resus and every time I felt we were going to lose him,” said Vicky.“ June 2017 was when Patrick’s health started to deteriorate. He was in intensive care with pneumonia. When I saw him lying in the bed with all the tubes, I held his hand and said to him It was okay if he wanted to go. But he fought back. I am so proud of him, he is so strong and brave.”
At the age of just two weeks Patrick was diagnosed with Pontine Tegmental Cap Dysplasia, a rare brain condition. He has global developmental delay as well as seizures and hearing loss. He only has one kidney which doesn’t work properly and no nerves in his eyes and he causes ulcers in them with his hands – he’s just had his eye lids stitched partly shut to help with the healing process. He also has no nerves in his mouth and lips which means he will often bite his lips, sometimes drawing blood, without realising what he is doing. His condition is so rare that when he was diagnosed, there were only 19 other cases in the UK.
Day to day life is incredibly hard for Vicky and Dean, who also have children Travis (eight), Phoebe (six), Charlie (six) and Freddie. Patrick needs 14 different medications and two different eye drops four times a day and he rarely sleeps at night. He is unable to move and requires round the clock care.
The family discovered Rainbows when the twins – who are now two – were 19 months old. “At first none of us wanted to go as we thought it was a place just for children who were going to die,” said Vicky. “But when we went, we loved it. It was an amazing place and we felt very comforted there. All of our meals are cooked for us and we are able to relax. Patrick was able to go on the swings in his pushchair, which was incredible as he had never been able to do that before. Patrick and Freddie both love the hydrotherapy pool, which is fantastic as they can’t go in normal pools because they are just too cold.
“Patrick has changed me. I am a completely different person and look at things differently. Patrick has taught me how to live for each day. Every time he smiles, he could take any pain away. He is a little miracle, he is amazing.”