Exactly one year ago, Samuel and Mary Ayeni, arrived Lagos with their conjoined twin girls—Miracle and Testimony. The twins known as Ischiopagus in medical parlance were fused together from birth at the lower half of the body, representing one of such uncommon births that occur in 6 percent out of 200,000 live births.
There was euphoria all over the world when on November 7-8, 2016, a team of paediatric surgeons and specialists at one of the world’s elite children’s hospitals—Le Bonheur Children’s Hospital, Memphis, Tennessee, USA—successfully separated the Nigerian conjoined twin girls.
Much of the elation was felt in Nigeria, particularly Enugu State, where the twins were born about a year earlier on November 16, 2015, and in Kogi State, where the twins parents hail from. ‘ But perhaps the greatest delight was in Lagos State, where the genesis of their journey to separation began in earnest.
The complex, high-risk 18-hour surgery that resulted in the complete separation of the girls was the climax of a long-drawn-out journey of fear, worry and anxiety that had trailed their birth. It was like a dream come true for the Ayenis because not only did the American Hospital take up the treatment and surgical separation of the twins completely free of charge, it also provided them and their older sister, Marvellous, and parents with free accommodation at its FedEx Family House all through the duration of the twins’ treatment.
Five months down the line, the separated twins are doing excellently. The elated father of the twins who spoke to Saturday Health Rendezvous on telephone from Memphis, was full of thanks for their successful separation. “We put everything on faith,” he remarked. “Without faith, things wouldn’t have worked out. When you give everything to God and believe, He will give you peace. I have the faith that He is helping us.”
Expressing gratitude for the feat, Ayeni, however, prayed the government to step up efforts of putting in place measures to assist families with such challenges. Today, April 22, 2017, marks exactly one year to the day Miracle and Testimony were first taken to Lagos after Linking Hands Foundation (LHF), a registered non-governmental organization with a focus on children’s education, health and values took up their case and championed the resolution of their medical challenge.
It was LHF that initiated the appeal and solicitation for financial and non-financial support towards the medical needs of the twins, as part of its “Every-Child-Counts Initiative.” However, it would not be the first time Nigerian conjoined twins would be transported abroad to be separated in a top-class health facility. The birth and separation of the Ayeni twins recalls to memory Favour and Faithful, the Shobowale-Davies twins born conjoined almost 14 years ago in Lagos.
At that time, it was the Lagos State Government that facilitated their pro-bono treatment at the Johns Hopkins Medical Centre, also in the US. A Consultant Paediatrician at the Lagos University Teaching Hospital, LUTH, Dr. Gbemisola Boyede, said although the incidence rate of conjoined twins is 1 in 50,000 births, however, since about 60 percent of the cases are stillborn, the true incidence is approximated at 1 in 200,000.
Boyede who is Founder of “Ask the Paediatricans” (ATP) Facebook Group said the birth of conjoined twins is often unpredictable and unavoidable but confirmed there is a higher predisposition towards female than male gender with a ratio of 3:1. “Conjoined twins are classified based upon the site of attachment and occur in roughly 1 in 200 identical twins pregnancies and 1 in 600 twin pregnancies. No one knows why conjoined twins occur although there are two main theories or explanations.
I guess it is practically unavoidable especially in those who have monozygotic twins; luckily it is rare,” she stated. Miracle after separation Noting that conjoined twins are always identical twins, she said it is important for everyone to be aware that there are lot of complications that can be associated with them depending on the site of attachment and if there are shared vital organs like the heart, the brain or the liver.
”The pregnancy of conjoined twins is termed high risk pregnancy lot of things can go wrong including over 60 per cent of the babies being stillborn. After birth, there are major challenges depending on where they are joined…challenges with resuscitation, feeding and nursing for the mother; not to talk of the inconvenience.”
On whether all conjoined twins need to be separated, Boyede said a lot of factors that come into play when deciding which conjoined twins can and should be separated especially where there is sharing of major organs. “It is not a simple straight forward decision as it has legal and ethical implications. For those who do not share any major vital organs, it is easier while for those sharing the heart or brain, it may be near impossible or one baby may be saved at the expense of the other.
“The chances of survival are good if the babies do not share any major organs or have other abnormal formation of their internal organs as conjoined twins are also prone to having abnormalities in other organs that are not even shared or joined together. “Even without separation, some conjoined twins have been known to live long especially the popular Siamese twins Chang and Cheng….
However, these days, most are usually separated and survival is generally better. In an admonition, she urged every pregnant woman diagnosed to be carrying conjoined twins to register with a Specialist—Obstetrician who will monitor her closely during the pregnancy which is high risk and promptly detect and treat all the possible complications like hypertension (high blood pressure), anaemia (low blood levels) and so on.
The birth of babies like Miracle and Testimony Ayeni, as well as that of Favour and Faithful Shobowale-Davies, brings into sharp focus the need to put in place a system within the Nigerian health sector that would take responsibility when such situations occur anywhere in the country. Highlighting the significance of ensuring complete care for the welfare and total rehabilitation of not just conjoined twins, but all children requiring specialist care as a result of rare medical occurrences, the Founder of LHF, Mrs. Efe Farinre, argued for proper management and treatment particularly for those not treatable in Nigeria.
Farinre’s argument is that by talking about the success of the Ayeni twins as well as the Shobowale-Davies twins, side-by-side; government at all levels in the country could be compelled to put protocols in place to respond to rare medical conditions that cannot be treated in Nigeria, as well as take definite action about improving health care in general. Speaking to Saturday Health Rendezvous, she observed: “The reaction of Lagos State to the medical needs of Favour and Faithful Sobowale-Davies in 2003, with utmost urgency, should be the minimum standard for our nation’s response to rare medical conditions affecting Nigerian children.
There must be a demonstrated commitment to ensuring all Nigerian children are healthy and alive. In addition, definitive steps should be taken to develop our local competence in terms of expertise, facilities and equipment, in addressing ailments that we have to take our children abroad for treatment. “To this end, there should be set protocols that mandate all government and private hospitals to report uncommon and locally untreatable medical conditions faced by Nigerian children to the Federal Ministry of Health.”
Farinre opined that: “In seeking support for the treatment of Miracle and Testimony, LHF rediscovered that there are people, corporations and organisations, home and abroad, that desire strongly to be of help to others. There are also many Nigerian medical professionals locally and in the diaspora who are looking for opportunities to give back to our nation from their wealth of knowledge and experience.
“If our government can set up trusted channels that enable collaboration among these concerned parties in tackling the medical needs of Nigerian children, we will see a remarkable improvement in their health and consequently, a significant reduction in their mortality rate.” In a chat, Dr. Leke Pitan, who was Commissioner for Health in Lagos State in 2003 when the Shobowale-Davies conjoined twins were born, said government must be at the forefront when such issues come up. Pitan, who spoke to Saturday Health Rendezvous from the United States of America where he currently resides, avowed that government must always show concern about the people and be responsible for their welfare at all times.
“We must be in the forefront. Where I come from, commitment is more than money, and confidence must be engendered such that even when you have no money, you have the trust of the people. The government learned a major lesson that even though there is paucity of resources, it must never use that as excuse.” On replication of the successes of the separated Ayeni and Shobowale-Davies twins, Pitan avowed: “Let the Federal Ministry of Health accept it as part of its service delivery that people should be served not as a favour but as a matter of right and responsibility of government.
”I would like to advise that the Federal Ministry of health and the states ministries of health there should be desks that would be ready and willing to make such contacts and processes available and let people know that it is a matter of right, not favour. The role of government is to bring to bear its influence for the benefit of the people.”
Also speaking to Saturday Health Rendezvous, one of the arrowheads of the arrangement for the Shobowale-Davies twins to undergo separation in the US, Dr Ade Tinubu, said a way forward is to be committed. Tinubu, a Fellow of American College of Surgeons, and currently Director of the Critical Care Unit, Lagos State University Teaching Hospital, LASUTH, argued that the country must put things in place so Nigerians would not keep going cap-in-hand all the time seeking for critical healthcare services.
“We have the resources, to be able to do that. You must have read about the Nigerian doctor in the Diaspora that carried out surgery on a baby while it was still in the uterus. Such a person will probably not come back here because the facilities are unavailable. When he comes what is he going to do, all the knowledge that he has acquired over the years would be wasted.”
Noting that government must provide the enabling environment that will encourage investors to come into the country, he said there must be the right policies and investment in the medical schools and Teaching Hospitals, so that there will be places where people can acquire knowledge in the science and art of medicine.
“When the right facilities are there about sons and daughters with all the training and knowledge that they have acquired, even if they are not coming to stay, they can still come home to contribute. Government must continue to invest in healthcare, not just in buildings. It must ensure that the buildings are built by those with the knowledge, and the training of care givers.”
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