“We have a diagnosis,” said the foetal heart sonographer at Great Ormond Street Hospital. When I heard these words, my hope that they had made a mistake in my last scan shattered. I was led to a counselling room by the nurse and I remember a box of tissues being placed close to me.
When the foetal cardiologist arrived, he explained that my baby had a heart condition called coarctation of the aorta, a narrowing of the large blood vessel that branches off the heart and delivers oxygen-rich blood to the body. I was given three options: to terminate the pregnancy; to give birth to my child and spare her going through the trauma of major heart surgery (which means taking her home after delivery with the understanding that she would probably die naturally after a few days); or to consent to her having a heart operation.
For me, the only acceptable option was the heart surgery; if there is treatment available, alḥamdulillāh. I knew the first option was haram. Allāh (subḥānahu wa taʿālā) says:
“Because of that We ordained for the Children of Israel that if anyone killed a person not in retaliation of murder, or (and) to spread mischief in the land – it would be as if he killed all mankind, and if anyone saved a life, it would be as if he saved the life of all mankind. And indeed, there came to them Our Messengers with clear proofs, evidences, and signs, even then after that many of them continued to exceed the limits (e.g. by doing oppression unjustly and exceeding beyond the limits set by Allāh by committing the major sins) in the land!”
Allāh (subḥānahu wa taʿālā) also says:
“And do not kill your children for fear of poverty. We provide for them and for you. Indeed, their killing is ever a great sin.”
The doctor warned me that there was a possibility that my baby would need several heart operations in the next few years. He also explained how heart problems could also cause chromosomal abnormalities. I assured him that I was committed to my pregnancy.
This meeting left me feeling highly anxious and distressed. My husband reminded me that we must accept the decree of Allāh (subḥānahu wa taʿālā) and one night, as I was reading the the Qur’ān I came across the verse where Allāh (subḥānahu wa taʿālā) says: “And in Allāh (Alone) let the believers put their trust.”
I felt that Allāh was speaking directly to me. His blessed words calmed my heart and gave me strength. We should not struggle against life events; we should be patient and grateful in times of ease and in times of hardship, with the full understanding that Allāh is the Most Wise and the Most Just. Very often when we are dealing with difficult moments in our lives, we panic and struggle against what we are experiencing. Allāh knows best what is good for us:
“And it may be that you dislike a thing which is good for you and that you like a thing which is bad for you. Allāh knows but you do not know.”
Regarding this verse, Ibn al-Qayyim (raḥimahu Allāhu) mentions that when a servant of Allāh:
“truly leaves his affairs to Allāh and truly becomes pleased with that, he would be surrounded by kindness and care in the preordainment, and he would be under the care and kindness of Allāh. His Kindness protects him from that which he fears and His Care makes it easy for him to bear that which He Preordained. When the preordainment is implemented upon the servant, the greatest cause of its implementation would be his trying to avoid it. Therefore, there is nothing more beneficial for him than submission.”
My daughter Ameena was born on the 30th July 2011, a beautiful, healthy-looking baby māshāAllāh. After she was born, I had to hand her over to the paediatrician to prepare her transfer to Great Ormond Street Hospital, where a bed was available for her in CICU (cardiac intensive care unit). I was not allowed to feed her for the first few days for medical reasons.
The most difficult letters I have had to write in my life were the letters of my signature on the consent form. The doctor informed us of a list of possible side-effects of the surgery, including paralysis and death. When I asked him if there was any other option apart from surgery, he said no.
On the 2nd of August, the second day of Ramadān, Ameena underwent major heart surgery. My husband and I accompanied her to the operating theatre. A mask was placed on her tiny face and she was put to sleep. The door of the theatre closed. My husband and I broke down.
A few hours later we were called to CICU. Ameena was on a ventilator, with several tubes and wires attached to different parts of her body which were linked to monitoring equipment. There was a thick, sealed, red line in the middle of her small chest. The operation had been a success alḥamdulillāh. With the blessing of Allāh (subḥānahu wa taʿālā), the surgeon was able to repair the coarctation.
In a room reserved for breastfeeding mothers to express their milk, I met a sister who was reciting the Qur’ān. She told me that her son had been born prematurely at 25 weeks, and suffered from many health issues. I met many sisters whose babies were born with heart defects and had to have surgery.
After a few days in CICU, Ameena was recovering well enough to be transferred to the recovery ward. With each day, some of the tubes and wires that were attached to her body and face were removed. In CICU, she was being fed breast milk through a tube in her nose, but this was removed in the recovery ward and she was able to feed normally, alḥamdulillāh. After a few days, she was discharged and we took her home for the first time.
In the next few weeks and months, Ameena failed to “thrive”; she had trouble gaining weight, her movements were limited, and she had respiratory problems due to her breathing tube being squashed in the operation. Blood tests revealed that she had Turner’s syndrome, a genetic condition that only affects girls. The symptoms are wide-ranging and vary from person to person. The two most common characteristics are short stature and infertility. Coarctation of the aorta is also a symptom of this genetic condition.
I remember a conversation that my children had on our way to pick up my sister from the train station. One of them made a remark about Ameena dying, which upset my other daughter. My third child, who was three years old at the time, replied, “We are going to love her.” Sometimes, young children, in their innocence, make statements that are full of wisdom, subḥānAllāh.
Every child takes you on a different journey. A child with health issues takes you on an intense journey through patience, compassion, mercy, hope and gratitude; it is a journey through love. He or she is a reminder that death is very close for all of us, that we should live every moment of our lives remembering Allāh and preparing for our return to Him.
True disability is not physical disability; the physical circumstances in which a human being lives do not diminish his or her value. We know, from the time of the Prophet (ṣall Allāhu ʿalayhi wa sallam), of Abdullāh ibn Umm Maktūm (raḍiy Allāhu ʿanhu), a blind man who dedicated his life and death to serving and protecting Islam, and learning the Qur’ān. He is held in such an honourable position in Islam that Allah (subḥānahu wa taʿālā) defends him in the Qur’ān. He was appointed acting governor of Madinah in the absence of the Prophet (ṣall Allāhu ʿalayhi wa sallam). Despite his blindness, he died as a martyr on the battlefield, clutching the Muslim flag in his hand.
ʿAṭā ibn Abi Rabāḥ (raḍiy Allāhu ʿanhu) was described as being lame and partially paralysed. He was a freed slave who dedicated his life to seeking knowledge from the companions of the Prophet (ṣall Allāhu ʿalayhi wa sallam) and later became the Mufti of Makkah.
ʿAmr ibn al-Jamūḥ (raḍiy Allāhu ʿanhu) was old and had a disabled leg, and still insisted on participating in the Battle of U’ḥud with the Prophet (ṣall Allāhu ʿalayhi wa sallam), where he died as a martyr. Abdullāh ibn Masʿūd (raḍiy Allāhu ʿanhu)was described as having a physical weakness. He was once climbing a tree to pick something for the Prophet (ṣall Allāhu ʿalayhi wa sallam). When the other companions saw how thin his shins were, they laughed. The Messenger of Allah (ṣall Allāhu ʿalayhi wa sallam) said, “Why are you laughing? The leg of Abdullāh will be heavier in the Balance on the Day of Resurrection than (Mount) U’ḥud.” Allāh blessed him with knowledge, wisdom, and the ability to recite the Qur’ān in a beautiful manner.
These inspiring stories demonstrate to us that people with physical weaknesses were fully integrated in Muslim society. “It is also worth noting that the focus was not on people’s disabilities, but on their abilities.” We all have a duty “to respect and support all human life, however it presents itself and to value the potential of every individual.” Being a Muslim means that we do the best with all the blessings, means, and resources which Allāh has bestowed upon us. With the will, help, blessings, support, and permission of Allāh, nothing is impossible.
Perfect health does not exist in the life of the dunya; it is a condition of the dwellers of Jannah. We are all limited physically and mentally in different ways because human beings have been created as weak. We are completely dependent upon Allāh for everything; we desperately need His help, His support, His forgiveness, His blessings in every moment of our lives. Only Allāh is Perfect and Ever-Living, the Self-Sufficient Master.
True disability is a heart that does not remember Allāh, a heart that does not love and worship Allāh, a heart that does not glorify Allāh, a heart that is spiritually dead. This is true disability. Abū Hurairah (raḍiy Allāhu ʿanhu) narrated that the Messenger of Allah (ṣall Allāhu ʿalayhi wa sallam) said: “Verily, Allāh does not look at your appearance or wealth, but He looks at your heart and your deeds.”
If you are worried that you will be unable to cope emotionally with a child suffering from health issues, then remember the words of Allāh (subḥānahu wa taʿālā): “Allāh burdens not a person beyond his scope.”
It is also quite common for doctors to make mistakes where prenatal scans are concerned. I have heard many stories about women being told that the child growing inside their wombs had physical defects and when the babies were born they were healthy.
Ameena is now three years old. She is a beautiful, intelligent, affectionate, happy child, māshāAllāh, who loves playing with her sisters and being cuddled. She started walking a few months ago, and her breathing problems have cleared up, alḥamdulillāh. She can say a few words and enjoys going out. She is under the care of many specialists at Great Ormond Street Hospital and is progressing well, alḥamdulillāh. She is a dearly loved and important member of the family.
My dear brothers and sisters in Islam, if we want to be truly successful in this life and in the life of the ākhirah, we have to apply the Qur’ān and sunnah to every situation in our lives, to every breathing moment of our lives. Remember that being a Muslim means to submit to the Will of Allāh and not to our own desires. The sick child or relative we are caring for could be our bridge to Jannah. Dr Bilal Philips explains how:
“The tests of this world are primarily for the spiritual growth of human beings. Just as an intense fire separates pure gold from the rough ore to which it is bound in nature, tests purify the moral character of the believers. They force the believers to choose their higher spiritual qualities over their lower desires.”
Allāh puts different situations in our lives to test us, to test our Īmān, to test how we think of Him. Accept the decree of Allāh (subḥānahu wa taʿālā) with patience and gratitude. Have good thoughts and good hope in Allāh. Know and understand that whatever Allāh does, He does good. We are the ones who are limited in understanding and knowledge.
Notes: Al-Qur’ān 5:32  Al-Qur’ān 17:31  Al-Qur’ān 14:11  Al-Qur’ān 2:216  Ibn al Qayyim, Al Fawāid  Al-Qur’ān 80:1-10  Saḥīḥ Musnad Ahmad 920. Also reported in Abi Yʿala, Mʿujam al-Ṭabarānī  Canadian Association of Muslims with Disabilities  Hurisa Guvercin, “People with Disabilities from an Islamic Perspective”  Saḥīḥ Muslim 6221  Al-Qur’ān 2:286  Dr Bilal Philips, The Purpose of Creation, p.50