Mother lost 3 children to rare disease and miscarried 6 times
Either stay with the husband she loves and not have healthy children, or remarry someone else who can have healthy kids at the risk of an unhappy relationship...which would you choose?
Ruba Bibi was delighted to be a mother at first. But after losing three children and six miscarriages as a result of cousin marriage birth defects, she is now at a crossroads on how to proceed.
All three of Ruba’s children died because they suffer from I-cell disease, also known as mucolipidosis II. The disease means children have a one-in-four chance of dying in early childhood and it is incurable. One suggestion presented to Ruba and her husband, Saqib Mehmood, is to separate and remarry. The reason for this is because they are cousins. They both carry the recessive I-cell disease and having children together highly increases the likelihood that their offspring will suffer from the I-cell condition.
Ruba was 17 and Saqib was 27 when they married. Three months after the ceremony, she became pregnant with their first child, Hassam. Born in 2007, Ruba thought he was a normal child. It wasn’t until a meeting with her doctor who identified a stiff hip in Hassam indicated a more serious issue.
Tests revealed that Hassam carried the rare inherited condition that prevents children from developing properly. Distraught, Ruba told Saqib who tried to comfort her and explain that all families go through similar issues and they will get through it together.
When he reunited with his wife and child 7 months later, he remarked that Hassam looked like a normal baby. But Ruba recognised physical and developmental differences between her son and other babies the same age. He grew slowly and was constantly visiting the hospital with chest infections. The most noticeable physical feature was that his head grew disproportionately to the rest of his body.
In 2012, Hassam passed away. Their second child, Alishbah, was born in 2010 with the same genetic disorder. And in 2013, she also passed away at the age of three.
Ruba approached a Muslim chaplain, Mufti Zubair Butt, at Leeds Teaching Hospital to ask if screening during pregnancy, and termination if I-cell was confirmed, was acceptable according to her faith’s teachings.
The chaplain advised the while it is acceptable, she needs to think carefully before going through with it.
“If you have this condition where the child is going to die in any case, or even if it doesn’t die soon, it will have debilitating illness, that’s sufficient reason to terminate before the soul enters the body, based on the sayings of the prophet,” Mufti said.
However, he advised her to consider the views of her community in her decision. And also to bear in mind that she would have to live with the act of terminating for the rest of her life.
In the end, Ruba became pregnant with a third child, Inara, in 2015 and refused to screen for I-cell disorder.
“I wanted them to treat it like a normal pregnancy. I didn’t want them to put the doubt in my head. I wasn’t going to have an abortion, so I wanted to enjoy the pregnancy,” Ruba explained.
Unfortunately, Inara was born with I-cell disorder and both Saqib and Ruba knew once she was born. She passed away in 2017.
Ruba accepted the connection between her children’s inherited genetic disorders and the marriage between the cousins.
How Ruba has been able to cope with the loss of three children and six miscarriages in the past ten years is unfathomable. She chalks it down to her parents’ support and her faith that keeps her going.
“God only burdens a person with how much they can take. Sometimes I think people are so lucky, they don’t have to try hard and they get a healthy child, but sometimes those children bring trouble when grow up and so those tests placed on them are different,” Ruba says.
“In this life I’m the unluckiest person, but in the next life I will be the luckiest because they were innocent children. And those children help you in the next life, because you will be with them.”
Studies have shown that first cousin marriage birth defects are double that of marriages between unrelated partners. Ruba and Saqib discovered the root cause behind their children suffering from I-cell disorder was due to their being recessive I-cell gene carriers.
There are several steps parents can take to avoid congenital birth defects in children.
In Singapore, there are four scans all women must have at different stages of their pregnancy. These are:
- Dating and Viability Scan (between weeks 1 to 12)
- Nuchal Translucency Scan (between weeks 11 to 13)
- Foetal Anomaly Scan (between weeks 18 to 20)
- Growth Scans (between weeks 32-36)
The purpose behind these scans helps gynaecologists to detect if your baby is growing normally and are important to help plan for any unusual detections. By discovering if your baby has a disorder like Trisomy 18, you can consult with your doctor what the next best solutions are to prepare for the future.
Many couples who struggle to conceive often consider alternative solutions. Fertility treatments like In-Vitro Fertilization (IVF) Evie Slow Release Insemination (SRI) treatment can help double the pregnancy success rate, especially for ladies under 35 years old. Evie SRI is also surprisingly affordable compared to the more well-known IVF treatment.
Through fertility treatments, doctors can also screen for any possible diseases in the embryos.
When you’re pregnant, you are eating for two people! The foetus draws its nutrients from what you eat, so it’s important that you’re getting the right fuel in your body. Moreover, having the right diet is a must to prevent congenital birth defects from developing.
Eating more folate-rich foods during the first 28 days of pregnancy reduces the risk of brain and spinal defects in the baby. Take DHA-rich foods to nourish baby’s growing brain and increase your calcium intake in the third trimester. That’s when your baby’s bones are rapidly developing. Depending on your health condition, your doctor will prescribe you medication or supplements too.