The doctors gave them a zero chance of survival, but they coped. The girls are already one and a half years old. But their bones are so fragile that they can even break from a cough.
You can’t even breathe near these girls, parents are afraid to touch and pick them up again, and for a pediatrician every visit is a terrible stress. Twin babies were born with a rare congenital disease – osteogenesis imperfecta. Or “crystal disease.”
One of the twins was born weighing less than a kilogram.
Claire and Phil Mowforth have been struggling with infertility for several years. Finally, another round of IVF was crowned with success: 34-year-old Claire became pregnant with twins. The parents-to-be were absolutely happy until exactly the 13th week of pregnancy. On screening, it became clear that the twins had a common placenta. This could complicate the course of pregnancy, but there was no reason for panic – the doctors decided that they would simply examine Claire more often.
At the 16th week, an ultrasound scan showed that the girls’ legs were somehow strangely intertwined. The mother-to-be was sent to another hospital in London, where a study revealed multiple fractures in the unborn twins. The little ones suffered from pain while still in the womb.
The twins were diagnosed with the same osteogenesis imperfecta. And they warned the spouses that the chances of the survival of the children are close to zero. The most common consequences of such a disease are breathing problems, curvature of the spine, fragility of bones and teeth, deformation of the chest. In addition, these children practically do not grow up.
Claire holds little Hope in her arms. At birth, she completely fit into such a bag – she was “packed” so that the girl would not freeze.
“We tried to think about the good, to hope for the best. But we couldn’t help but think that our girls might die as soon as they were born, ”says Claire.
The babies were born at 35 weeks. Doctors warned that it would be very difficult to avoid fractures during childbirth. And so it happened – one of the babies, Amelia, had five broken ribs. She was born very small – 2297 grams. And Hope was even less – only 900 grams.
Amelia got better pretty quickly. And Hope had a hard time. In the second week of her life, she stopped breathing. She was later diagnosed with high blood pressure, heart failure and chronic lung disease. For the first time, the baby saw the world outside the walls of the hospital when she was already 4 months old.
The couple had to be torn between home, work, hospital and their eldest daughter, seven-year-old Grace.
For nine months between the birth of children and their discharge, the family rushed between the house and the hospital. The girls were very weak: infections and complications from the lungs brought them back for treatment over and over again.
“It was a real challenge for our family,” says Claire.
Now their life is on track. But she did not become easy. Babies are still so fragile that their bones can break when changing clothes, from violent sneezing or coughing when they roll over or fall. One time, an arm fracture happened while measuring pressure in a doctor’s office.
Family life is still not easy. But, as the parents themselves say, good
“Seeing our girls suffer is unbearable. You rush to every cry, fearing that this is not just a normal child’s cry, but another fracture. We were afraid to touch them again. And some of our relatives are still afraid, ”says Claire.
But girls are alive, growing and developing – this is the main thing. They learned to roll over, even sit. When they grow up, the babies will have to undergo surgery to strengthen and straighten their legs. In addition, they undergo special procedures to prevent bone loss.
“Amelia and Hope have overcome so much already. They are two of our little miracles, ”smiles Claire. She believes: everything will still be fine.