Why do most of the parents of 5,000 newborns who tested positive for genetic diseases lose contact?
Wuhan City launched the "48 Newborn Genetic Disease Screening" which lasted 6 and a half months. So far, 62,172 newborns have been screened, of which 4,955 were suspected to be positive in the initial screening, but these children were notified to come The review encountered great difficulties. Yesterday (17th), reporters learned from the Wuhan Neonatal Disease Screening Center that after receiving follow-up text messages and phone calls, more than half of the parents of children were either worried that it was a scam or did not take it seriously, and the follow-up rate was extremely low. The center's general manager made more than 20,000 phone calls and sent more than 9,000 text messages, and finally "recovered" more than 4,200 suspected children.
On November 1 last year, Wuhan launched “48 newborn genetic disease screenings”, 43 of which were paid for by the government. Every baby born in Han can be screened through heel blood pricking 72 hours after birth. The test results will be available in about one month. If a suspected subject is found, parents will be asked to take the child to the center or via text message or phone call. Review at any hospital. "If treated quickly, these children can be like normal children in the future, but if they miss the golden intervention period of 3 months after birth, their intelligence, growth and development will be irreversibly damaged." Li Ruizhen, director of Wuhan Neonatal Disease Screening Center He said that recovering every child as much as possible has become a heavy responsibility in the hearts of every staff member.
“Either they regard it as a harassing call, or they think it is a money scam call, and many parents know nothing about these hereditary metabolic diseases.” Wei Wenqiong, the head nurse in charge of statistics, said that when the text message notification was sent, I will also receive weird replies such as "Your dad is the only one who is sick" and "Get out of here".
“We can’t bear to see a child with a genetic disease miss treatment.” Since November 20 last year, 10 nurses in the center have to complete their work while also using their spare time and evening breaks to provide care to patients. Parents call. Wei Wenqiong made a request at that time: each nurse was responsible for 300 children. On average, it is estimated that each child needs to make at least 3-4 calls, and it is common to make 7-8 calls before contacting the parents. The intensive telephone offensive lasted until March this year, with the police making more than 10,000 calls. Since April, the center has assigned Wei Wenqiong and two nurses to take charge of this work. The two nurses have to make more than 80 calls a day on average. In total, more than 10,000 calls have been made so far in the second phase. At the same time, the center also launched a text message reminder service.
Ms. Li from Qiaokou District received a follow-up call from the center when her son was just one month old. She always thought it was a scam and ignored it. It was not until she received the sixth phone call and the second text message, and after a month's delay, that she took her child to the center for examination, where she was diagnosed with hyperphenylalaninemia and received timely treatment.
Yesterday (17th), reporters saw 10 thick "new screening follow-up records" at the center. In addition to basic items such as name, delivery hospital, and date of birth, the name of the caller was also included. , the date and number of calls, the person who answered the call, the reason for not answering, and the parent’s reply content are all recorded in detail. At the same time, all this information has been entered into the Wuhan newborn genetic disease screening information management platform. Screening data shows that among the more than 4,200 suspected children "recovered", more than 10% were eventually diagnosed, which is basically the same as the relevant national data.
6 consecutive phone calls
Thinking it was a new trick to deceive people, Qiaokou’s mother was dubious and found a rare disease after re-examination
“I haven’t eaten less in the past six months.” "The door is closed", and people often think of them as liars and yell at them on the phone." Wei Wenqiong, the head nurse of the Wuhan Neonatal Disease Screening Center, is full of grievances, but as long as the parents of the child finally agree to come for a review, whether there is no problem found or they receive timely treatment after diagnosis, She will feel relieved.
The good baby was diagnosed with a rare genetic disease
28-year-old Ms. Li lives in Qiaokou and gave birth to her son at Wuhan Tongji Hospital three months ago. Shortly after her baby was one month old, her mobile phone received a text message from an unknown number: "Dear Li xx from Wuhan Children's Hospital, your boy's newborn disease screening result is suspiciously positive. Please go to the hospital for review as soon as possible. Detailed result inquiry Newborn disease screening section on the official website of our hospital. Please reply 1.
"Looking at her well-behaved son in her arms, Ms. Li instinctively thought it was a scam text message and ignored it.
Three days later, she received a call from the Newborn Disease Screening Center of Wuhan Children's Hospital. "I was born in Tongji, why did the Children's Hospital have my phone number? It must be a new trick of the scammer. "After that, Ms. Li immediately stopped answering the call whenever she saw it.
In a blink of an eye, her son was 2 months old. When she was sorting out the birth certificates and preparing to name him, Ms. Li discovered something. A green booklet with "Newborn Disease Screening Certificate" written on it. Thinking of the two text messages and six phone calls she had received before, she rushed to the Wuhan Newborn Disease Screening Center with her son in her arms. It turned out to be true. After re-screening, the baby was diagnosed with rare hyperphenylalaninemia. Timely intervention would have no side effects.
I don’t believe that taking it seriously is the main reason for refusing screening.
“Disbelief and misunderstanding are the main reasons for rejection. "Wei Wenqiong believes that many parents do not understand and do not care about what the heel blood test is about. A considerable number of people see the phone number starting with "59" and instinctively think it is a scam call.
And Parents of babies born in other hospitals often have doubts about the channels through which the screening center obtains their information. Wei Wenqiong explained that all children born in regular medical institutions in Wuhan will be sent to Wuhan after their heel blood is collected. The Newborn Disease Screening Center conducts testing. On this monitoring platform, center staff can clearly see each person’s detailed information.
Nurse Liu Lu is the telephone specialist for “Newborn Disease Screening”. She only took up her post at the beginning of March. In addition to sending text messages and calling children with suspected cases every day, she is also responsible for providing guidance. Today (17th) at 11:30 noon, the number of children is gradually decreasing. She told reporters in a hoarse voice that for the first time. Children who are suspected to be positive will be notified by text message first. If the child has not come for re-examination after 3 days, they will be notified by phone. Three calls to the same phone number are considered rare, but eight times out of ten is common.
“A person has to talk for at least 2-3 minutes. After making 80 calls a day, my throat hurts as if it was on fire. "The reporter opened the phone record book and found that Liu Lu called 108 people on March 23. She said with a wry smile that it would be good to catch up to half of the three phone calls. The girl who came at the same time as her has already transferred. Her body The pain was bearable, but what made her most uncomfortable was that some parents knew clearly that their children had a disease but didn't take it seriously.
A week ago, Liu Lu gave birth to a patient with suspected "thalassemia". The child's parents called. The child's father told her on the phone that the child's mother had Thalassemia. He checked online and found that "no treatment is needed" and quickly hung up the phone. No matter how many times Liu Lu called, she stopped answering the phone. . That nonchalant tone made Liu Lu feel sad for her child for a long time.
Some parents finally listened to the advice and came for follow-up consultation with their children. When the doctor said they needed to draw blood, they immediately held their children again. I can’t hold him back anymore
The parents of the 15-year-old suspected child have lost contact
The reporter saw in Wei Wenqiong’s office that the electronic management platform not only records monthly screenings. In addition to checking the total number, number of people recalled, and recall ratio, she also recorded in detail the reasons for non-recall, including downtime, wrong number, empty number, future notification, unreachable, refusal to visit, shutdown, etc., as well as solutions in her office. , there are also 10 "New Screening Follow-up Records", each of which is more than 40 pages thick, with detailed notes on the number of calls, date, recipient, patient's reply and caller.
Wei Wenqiong said helplessly that if the number was wrong, the staff could only contact the hospital where the baby was born. Unfortunately, there are still 15 parents who have lost contact.
Li Ruizhen, director of the Center for Inherited Metabolic Diseases for 27 years, is well aware of the harm caused by these rare inherited metabolic diseases to children. Ten years ago, a father from Hanchuan came to her with his 6-year-old son, hoping to help his child grow taller. The boy had wide shoulders, a flat nose, thick lips, rough skin, and was more than a head shorter than normal children. Li Ruizhen recognized at a glance that this was a child with congenital hypothyroidism, and the test results confirmed her inference.
Because it comes too late, the child's intellectual damage cannot be reversed, and the previously lost height cannot be regained.
Six years ago, this father found Li Ruizhen again holding his newborn daughter. The results of newborn disease screening showed that her daughter also suffered from congenital hypothyroidism. She started to take thyroid-stimulating hormone supplements from 20 days after birth. The girl's height was above average in the class, and her grades were among the top in the class.
“Two children in one family have completely opposite fates due to different intervention times.” Li Ruizhen said worriedly that children with genetic metabolic diseases are often the same as normal children when they are born, and there is no obvious difference. What's so special is that parents will slowly discover the difference in their children months or even years later. By this time, irreversible damage to intelligence and development has been caused, and there is nothing doctors can do.
Come to the hospital as soon as possible after receiving a follow-up text message after the full moon
Li Ruizhen told reporters that among the top five genetic metabolic diseases with current incidence rates, congenital hypothyroidism and phenylketonuria In addition to affecting physical development, it can also affect intellectual development; severe thalassemia and favismosis can even be life-threatening. In children with congenital adrenal hyperplasia, harmful metabolites produced can pass through the blood-brain barrier and cause brain damage.
“Fortunately, these diseases currently have intervention and treatment methods. The key is to get there as early as possible.” She explained that children with hypothyroidism only need to supplement thyroid hormone to be like normal children, while children with favismosis If you don't touch broad beans and broad bean products, you will be fine. Children with mild to moderate thalassemia in their 90s only need regular check-ups.
Li Ruizhen reminded that for all newborns born in Wuhan, after the baby has been fully breastfed 6 times within 72 hours of birth, he should actively cooperate with medical staff in the delivery hospital to perform heel blood sampling, leave accurate contact number and address, and Keep the informed consent form. Normally, the results of newborn disease screening will be available in about a month. Parents can make online inquiries, and the center will notify them via text message and phone call after the results are available. After receiving the text message notification of the follow-up consultation, parents are asked to take their babies to the Neonatal Disease Screening Center of Wuhan Children's Hospital on the sixth floor of the outpatient clinic for re-examination and diagnosis as soon as possible, so as to receive timely treatment as soon as possible.