All newborn babies need lots of love, touch and care. But when a baby is premature, they need it even more to grow and survive outside the womb. I had written extensively about how I bonded with my 28-weeker premie. However, the below article from BBC may provide even more tips for the parents of premature babies.
Bond with your baby
The main risks for premature babies are infection and breathing difficulties. Their breathing and heart rate need to be carefully observed, to allow a quick reaction from medical staff, if needed. A lot of the equipment in special care is used to measure breathing, temperature and heart rate.
Taking care
A baby in special care tends to sleep much of the time, and it can be difficult to feel you’re doing anything for her. But there’s plenty you can do.
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Posted by admin at 10:32 AM. Filed under: Prematurity
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Thursday September 30, 2004
Sharing grief with other mums
BY P. ANGELINA (The Star)
LOSING a child is a traumatic experience which bereaved parents deal with in different ways. Some lose their will to live, others go into mourning and some throw themselves into work.
For 40-year-old Chan Lilian, from Penang, the loss of one of her sons led to her learning something new – website building.
“My interest in website building began in July 2002, two months after the death of my fourth son, Vincent,” says the full-time mother of five.
“Vincent was a premature 28-week-old baby. He was diagnosed with bronchopulmonary dysplasia (BPD) and was just seven months old when he died. After his death, I had a strong desire to keep my memories of him alive,” she says.
“You see, we had Vincent cremated and his ashes were scattered into the sea. According to Chinese practice, small babies are not allowed to be buried in a graveyard. As a result, I did not have a grave or columbarium that I could visit. This prompted me to do something to keep him alive in my memory,” she writes to In.Tech via e-mail.
According to Chan, memorial websites are not only about parents wanting to keep the memories of their deceased children alive; they are also about finding inspiration and strength.
Lasting memories
Chan says that the idea of creating a memorial website for Vincent first came to her about two years ago, while she was surfing the Internet for more information about her son’s illness.
“Actually, I had Internet access from the year 2000, but I hardly surfed back then,” she says. “I only used the Internet to search for news on travel because I was travelling a lot at the time and I found a lot of useful information about the countries that I was going to visit.
“When my son fell ill, I started using the Internet to search for information about his illness,” she says.
According to Chan, it was during one of these search sessions, that she first stumbled upon memorial websites of deceased children.
“At the time, I stayed away from the memorial websites because it was frightening to know that other children had died of the same illness,” she adds. “After Vincent’s death however, I went back to visit those memorial websites.
“There was something about reading the tributes. They usually made me cry. However, it was comforting to be able to cry during the early days and weeks of losing my son because it helped relieve some of the pain.
“It was also very touching to read some of the stories because the websites usually portrayed the magnitude of the parents’ love for the children they had lost.”
According to Chan when she saw how bereaved parents overseas kept beautiful memorial websites of their deceased children and shared their feelings with other parents, she was inspired to do the same.
“By having a memorial website for my son, I could also bring the memories of Vincent to life. This would sort of immortalise him and leave something that others could remember him by.”
Inspiration and strength
According to Chan, memorial websites are not only about parents wanting to keep the memories of their deceased children alive; they are also about finding inspiration and strength.
“Parents who have lost their children, inevitably go through a very tough time. They often need support from their loved ones to help them cope with their loss.
“Unfortunately, most of the time, people around them do not know what to say or how to react.
“By reading all those memorial websites and creating a site for my son, I came out wiser and was better able to cope with my own grief. I want to encourage others to do the same.”
Building websites
According to Chan, she used Yahoo!’s PageBuilder templates to build her first website, MyLittleVincent (www.geocities.com/lilianc78).
“I stumbled upon Yahoo! Geocities while surfing one day, and decided to try its PageBuilder templates to create my first website. I found that it was relatively easy to put together a website using Yahoo!’s WYSIWYG (What You See is What You Get) editor,” she says. “It was sort of like cutting and pasting onto a piece of paper.”
She began creating MyLittleVincent.com by uploading his photos, stories and how she coped with the pain of losing him.
“Today, MyLittleVincent (www.geocities.com/my_little_ vincent) has evolved from a few pages to a complete website,” she says.
However, merely creating a memorial website was not enough.
Chan working on her My Little Heroes website from her home office. This website is dedicated to all babies and children who bravely battle their illnesses in the ICU.
“The first few days and weeks after the loss of my son, I was very much in mourning and needed some kind of outlet to release the pain. I had this burst of energy and wanted to channel it into learning something new. So, I decided to study HTML (Hypertext Markup Language),” she explains.
According to Chan, she learnt HTML online at Webtech (www.webtechu.com).
“Actually, I found out about this site through a teenager who works at an Internet café in Petaling Jaya,” she says, adding that the owner of Webtech is an elderly man from New Zealand.
“The instructor would give me an assignment each week and I would have to build the website and put it online,” she says. “It took me less than two months to learn how to do everything from frames to tables.”
Chan says that she found it rather easy to learn HTML online because there were so many helpful individuals who were willing to coach her step-by-step.
“Many kind elderly ladies from the United States helped me along the way,” she says. “It was rather amusing really because all they wanted was someone to talk to. In exchange for all the things they taught me, I provided a listening ear,” she says.
According to Chan, she decided to delve even further into web development once she had learnt the basics of HTML.
“I bought tutorial books to learn about various scripting languages such as DHTML, XML (eXtended Markup Language) and JavaScript,” she says. “I even bought books about web-building programs.”
Learning web development was not as easy as Chan makes it sound, though.
“Anyone who knows HTML, knows that the initial stage can be very frustrating because it is a completely new language that you are learning. One extra spacing, an inverted comma or a wrong alphabet can drive a person nuts because that one tiny error will screw up the entire website.
“I spent hours sometimes, just staring at the HTML codes trying to figure out where I went wrong,” she says. “But, I am glad that I learnt to build websites the hard way because it has taught me how HTML really works.”
Plans for the future
According to Chan, this year she created a website dedicated to all babies and children who bravely battle their illnesses in the ICU (Intensive Care Unit). The website called MyLittleHeroes can be found at www.mylittleheroes.com.
“A generous local company gave me free webhosting and I used it to create MyLittleHeroes.com,” she explains.
Chan says that she built the website to help mothers with critically-ill babies or children.
“I hope to initiate a support group for these mothers, and I am confident that with the care and support of local doctors, I will be able to turn MyLittleHeroes.com into a resource centre for mothers,” she says.
“I know the difficulties parents face when their children are critically ill and on life-support. When I was taking care of Vincent, I relied a lot on parents who were in the United States to give me the emotional support that I needed,” she explains.
“I was also lucky to have Vincent’s doctor guide me on how to use the Internet to search for more information on my son’s illness. With the additional information, I was less frightened and felt much more in control of the situation.”
Chan has recently completed a book titled Little Hero which she expects to launch next month.
“Little Hero is a guidebook for parents coping with a critically-ill child in the ICU. The book is a balance between reality, hope and faith,” she says.
Initially Chan had wanted to give a donation to the University Malaya Medical Centre (UMMC) in appreciation of the staff’s dedication.
“However, after talking it over with Vincent’s paediatrician, Dr Cheang Hon Kit, I realised there wasn’t much I could contribute as the medical equipment at the hospital are all very expensive. It was Dr Cheang who finally suggested that I use my writing skills to prepare a handout for parents taking care of critically-ill children in the ICU.
“That handout turned into a book in English and Mandarin,” she says.
According to Chan, Dr Cheang and Professor Madya Lucy Lum of UMMC helped her write the handbook.
“It took me only two months to get all the information onto paper, but it took a few months for Dr Cheang and Professor Lum to write about the medical aspect of things.”
She initially felt a little apprehensive about publishing a book. But in the end, she decided to go ahead with it.
“You see, I was afraid that some parents with children on life-support would find the book demoralising since I had lost my own son. But I decided that I had to do what I could to provide encouragement to parents taking care of critically-ill children in the ICU.”
Chan hopes that her guidebook will help turn the clinical environment of the ICU, which is filled with all sorts of strange high-tech machines, into a place of hope for parents.
“I’d like to see my book as something that helps parents adapt to the ICU environment,” she says.
According to Chan, the book will be distributed free.
“However, I am only printing about 2,000 copies – the bulk of which will be distributed at UMMC and the hospital where Dr Cheang works. I also intend to put excerpts of the book online.
“I hope to eventually find sponsors to bear the cost of reprints,” she says. “For the book to be effective, it has to be made easily available to parents.”
Chan can be contacted by e-mail at lilian(@)mymomsbest.com. .
Posted by admin at 10:32 AM. Filed under: Encouragement
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I wish my baby’s doctor had pre-warned me that premature babies do get apnea and it is as common as breathing. But no…..no one briefed me about that. My son was born at 28 weeks so he is expected to get apnea, i.e. when his brain forgets to command his lungs to breath. You see, at 28 weeks, his is supposed to be in th womb and hence, his lungs are not needed to breath.
When it happened, I was alone with him and it frightened me badly because the monitor started beeping and lights are flashing all over. The nurses rushed over and I thought that was a real emergency.
Therefore, now, when I look back, I feel short-changed because everyone brushed of my fears with a curt reply, “oh this is nothing, all babies get them”.
Here, I would like to take some information and paste here for parents information:
Definition of Apnea
Apnea is the most common problem of ventilatory control in the premature infant frequently prolonging hospitalization and the need for cardiopulmonary monitoring. The standard definition of apnea is cessation of inspiratory gas flow for 20 seconds, or for a shorter period of time if accompanied by bradycardia (heart rate less than 100 beats per minute), cyanosis, or pallor.
Do check out the website for more information.
Diseases Associated with Apnea
Apnea is only a symptom and frequently occurs secondary to other disease processes. However, ‘Apnea of Prematurity’ is a specific diagnosis and also one of exclusion. Other causes of apneic spells should be pursued if the apnea progresses in severity, fails to respond to appropriate therapy, severe episodes occur on the first day of life, or it appears at a gestational age where it should not occur. Apnea should be treated with simultaneous attention focused on the primary disease. Treatment of these associated problems may result in a decrease in the frequency and severity of apneic spells. These causes include:
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Posted by admin at 10:32 AM. Filed under: Birth, Prematurity
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This site is dedicated to provide encouragement and useful information for caregivers of critically ill and special needs children.
MY here refers to Malaysia and Little Heroes are the small babies and children who have battled illnesses in the intensive care unit.
