Support group for parents of ‘preemies’ launched
When Nichole Tucker’s baby was born three months ago, there was no time to call her partner, Michael Lambe, no time for pain killing drugs or any time to prepare mentally.Her daughter Marley was born a few short minutes after Ms Tucker arrived at the hospital for a stress test a month before she was due. She weighed four lbs.Five months ago, Tamika Seymour developed preeclampsia during her pregnancy and had to be induced. Symptoms of preeclampsia include hypertension and can lead to seizures, stroke, organ failure or the pregnant woman’s death.Ms Seymour’s daughter Sanaa was born a month early. She weighed five lbs 5oz. Both Sanaa and Marley, despite being small at birth, are now thriving and have no apparent problems.Unfortunately, many parents of preemies are not so lucky. Premature babies are at risk for severe to mild cerebral palsy, deafness, blindness, lung problems and learning disabilities such as attention deficit disorder. That is why Ms Seymour and Ms Tucker are now part of a new support group for parents with premature babies formed by the Child Development Programme (CDP) which operates from Palmetto Road in Devonshire.“The number of premature babies is on the rise in Bermuda, and now makes up nearly half of my caseload,” said CDP physiotherapist Caroline Leek.“I think the reason we are having so many premature babies is that hospitals can now keep babies alive at a lot smaller birth weight,” said Miss Leek. “But premature babies are a more at-risk group. With children born at less than 26 weeks there is a 50 percent chance they will have problems in the future such as physical, visual or chronic lung problems.”Often the reason for a premature birth is unknown, but some causes can be the mother’s low weight, obesity, multiple abortions, structural problems in the uterus, smoking and drug abuse or pregnancy complications such as preeclampsia. Ms Tucker will never know why her daughter was born early. Both she and Ms Seymour have had previous premature births.“Babies who are born extremely early and need lots of medical intervention are usually sent overseas,” said Miss Leek. “Ideally, they continue to be monitored by the overseas teams. There is also a whole group that are born here at King Edward VII Memorial Hospital (KEMH) because they didn’t have more severe complications.“A lot of time, with premature babies, there are no warning signs. It is an emergency situation. With multiple births they can sometimes predict that the babies will be born early or are at risk for problems and the hospital can fly them away.”Flying Ms Tucker out of Bermuda was out of the question. She went into labour the night after her baby shower. She awoke and felt a strange shifting in her lower back.Babies shift all the time during late pregnancy, but for some reason the feeling worried her. She telephoned the hospital, but her fears were dismissed. She decided to get a hot bath. Then she felt pain.“Something told me to go down there to the hospital and double-check,” she said. “I called again and they said to come in for a stress test. I left home at about 4am and drove myself. I was fine. When I got to the hospital I think I had my first contraction.“Next thing you know they were coming back to back. When I went upstairs they had stopped. I asked the nurse to come and check me. When she went to examine me for the stress test the baby’s head was coming out. ‘Okay’ she said ‘you know the baby is coming out, don’t close your legs’. I said, ‘what do you mean?’ Then we had to rush around to the birthing room. Before I even got in the bed she came out.”Ms Tucker and Ms Seymour meet once a month with other parents of preemies and their babies, plus staff at CDP. It gives the parents time to socialise and exchange notes, while staff take a good look on how the babies are developing.There are two age groups: zero to 12 months and 12 months to 24 months. The groups have meeting times in the morning and in the evening to accommodate working parents.“A full-term baby is classified as 37 weeks plus,” said Miss Leek. “When the baby is growing in [the uterus], all development finishes at 36 weeks, so for babies born before 36 weeks they are considered premature because their development hasn’t finished. “So we monitor all premature babies from 35 weeks and under. I feel the children on this Island get extremely good service. That doesn’t happen in other parts of the world. Even if a 35-weeker doesn’t seem to have any problems they will still be checked and monitored. They will receive a referral from the health visitor, their pediatrician, or from KEMH.”Nicola Brown, an occupational therapist at CDP said premature babies are tracked so closely because their conditions are sometimes evolving. A learning disability, for example, may not show up in a newborn, but may start to show when the child is a year old. “We see some premature babies weekly and some we see monthly,” said Ms Brown. “Some improve and we see them less often. We are trying to track them until the development screening we do with all children on the Island [until age two]. We do have some older preemie children we are tracking straight off to school.”Children who need it can receive physiotherapy and occupational therapy through CDP. Miss Leek said the good news is that research has shown that at-risk babies, or babies with development delays who receive early intervention, obtain development milestones faster and score higher on developmental tests.“So what we are doing is backed up by research,” she said.Shelley Knight, CDP portage programme supervisor, said the support group was piloted a year-and-a-half ago to identify those children who might need follow-up services.“We also wanted to find a way to see the children here instead of going into the home,” she said. “We don’t have as much time to go into the homes. It is also a way of getting parents together. Our first pilot was pretty successful. We got lots of positive feedback from the parents. We monitor and evaluate them individually as well as through the group.”The preemie parent support group meetings include talks by various people in the community. For example, Liz Boden who runs the Nurses’ Practice, talked with parents about the importance of reading to babies.Another speaker talked about the Island’s Kindermusik programme and the importance of music to a baby’s brain. There are also talks about dealing with behavioural challenges.“It was excellent,” said Ms Tucker. “I haven’t had the chance to take all the classes but I’m looking forward to the next one. The infant massage class was very informative. I hope to take all the classes this year.”Ms Seymour said: “It’s great. It’s a real plus that parents can socialsze while the babies get what they need. It’s an intimate group which allows me to ask questions and get answers. It’s enjoyable for both me and Sanaa.”“The goal is to give the parents coping strategies,” said Ms Knight. “Emotional support is also a huge part of the reason behind the group. We would like to see the parents form their own support group similar to the multiples group that exists on the island. In the last group we saw parents making connections and talking through different challenges, which is good.”She said one of the stresses on parents of premature parents is basic finances. Many parents have to make the heartbreaking choice of staying home with a sick or challenged baby versus going out to earn their living. “I think more needs to be done for parents of premature babies,” she said.A significant portion of the premature babies seen by CDP are multiples.“We are seeing a higher occurrence of multiple birth through in vitro fertilisation (IVF), and with multiple birth there is a higher chance of premature birth,” said Ms Brown. “It is the multiple factor not the IVF factor that causes it.”For more information, telephone 295-0746.