When mummy Christabel Koh gave birth to her baby girl Chrislyn 5 years back, she was shattered. During C-section, doctors found that the baby’s tiny left hand had got severed in the womb. She had been affected by a rare congenital disorder called amniotic band syndrome during pregnancy.
Hear Christabel’s story about her little girl’s amniotic band syndrome and how she decided to turn her life around to give her daughter a better life. Read on to also be better informed about this condition and how it is diagnosed.
“They found Chrislyn’s tiny left hand inside my womb,” recalls this mummy.
She Had Amniotic Band Syndrome During Pregnancy
In the case of amniotic band syndrome during pregnancy, parts of the amnion hang loosely, like thin threads inside the amniotic sac. These amniotic bands can then accidentally twist and wrap around different body parts of the baby, which can affect the little one in many ways.
In Chrislyn’s case, the bands had gone all the way around her left arm, cutting off half of the forearm, and fusing the fingers on her right hand.
Mummy Christabel tells Women’s Weekly, “Throughout my pregnancy there hadn’t been any symptoms that showed I had ABS.”
It wasn’t easy for Christabel to cope with Chrislyn’s disability. She found herself plunging into depression, and harbouring suicidal thoughts.
Things got so bad that she ended up divorcing Chrislyn’s father. She saw no hope for herself or for her baby.
“I Eventually Fell In Love With Her…”
Christabel struggled to rein in depressing and suicidal thoughts. The fact that she was jobless and bankrupt made things worse.
As she tells Women’s Weekly, “I had no job, a mountain of hospital bills, and a child with an uncertain future. Many times I’d climb up to the highest floor with Chrislyn in my arms, ready to throw us both over.”
On one occasion, police took Chrislyn away from her and locked her up for 24 hours. It was then she realised how much she loved her baby. She decided to turn over a new leaf.
She found a freelance job as a shopper with Honestbee which gave her the flexibility to look after her baby. Chrislyn’s father pitched in financially as well, and the baby had to have three major surgeries to separate her fused fingers.
Things started to look up, and today Christabel is a full-time lead supervisor at Honestbee. She has even bought a 4-room HDB flat with her mum.
PHOTO: SCREENGRAB THE NEW PAPER
5-year-old Chrislyn is doing well too. For Christabel, being mum to Chrislyn has been such a joy, she wouldn’t have it any other way.
“I was convinced that her quality of life was going to be so poor it would not be a life worth living. But she’s defied all expectations. I didn’t know, because I couldn’t have known back then, how strong my little girl is and that I would eventually fall in love with her”, Christabel tells Women’s Weekly.
Her daughter is her hero today.
“I marvel at how she learnt to use her hand and her stump to feed and clothe herself. She is my inspiration. If she can do all that despite her condition, I have no excuse,” says Miss Koh to The New Paper.
“My greatest wish for her is that she’ll never feel less capable than other girls just because she’s missing a hand.”
“If she wants to play the violin or dance the ballet, I’ll go all out to make it possible for her. I will do everything I can to help her fulfill her dreams.”
Here’s wishing this mummy and daughter lots of love and happiness.
What Is Amniotic Band Syndrome During Pregnancy?
Amniotic band syndrome (ABS) is a condition that occurs when you are still pregnant.
When the baby is in your womb, it is encapsulated in your amniotic sac, which contains amniotic fluid. The amniotic fluid keeps the baby afloat.
Interestingly, the amniotic sac containing the baby and fluid has two films that stick together. The exterior film which faces the uterus, is the chorion, whereas the inner film surrounding the baby is the amnion.
Image Source: University of San Francisco
ABS affects an unborn baby when the amnion tears abruptly, but without damage to the chorion.
Parts of the amnion then hang loosely, like thin threads inside the amniotic sac.
These amniotic bands can then accidentally twist and wrap around different body parts of your baby, which can affect your little one in many ways.
Depending on which body part is entangled and whether it is bound tightly, blood flow could be constricted and impact your little one’s development.
These birth defects include:
- Missing limbs or digits. A band that twists around a limb tightly can lead to its amputation, such that the baby is born lacking fingers and toes, or may be born with a partial arm or leg. At times, the baby is born with dead limbs which need to be removed surgically.
- Cleft lip or palate, if the band goes across the baby’s face.
- Clubfeet, which commonly happens with babies suffering form ABS.
- In the worst case scenario, fetal death. If the amniotic band twists onto the umbilical cord, it cuts off blood supply. This presents a risk of miscarriage.
How to diagnose ABS
Doctors can diagnose ABS before the baby is born, or, more commonly, after he is born.
Pre-birth diagnosis
Experienced doctors or specialists might be able to accurately pinpoint ABS based on an ultrasound scan. Doctors normally perform this scan in the baby’s 12th week in the womb.
If the doctor suspects that the baby has ABS, do discuss this with an experienced specialist.
Amniotic bands are minute in size and very difficult to see even with ultrasound. This often leads to misdiagnosis. An expert in ABS will be able to guide you with their professional opinions on what the ultrasound scan might mean.
Post-birth diagnosis
Once you have given birth, there are several ways your doctor can assess whether your baby has ABS or not, such as by:
- A physical examination. Your doctor will look for deformed limbs or any other physical abnormalities with your baby.
- An X-Ray, to assess how deeply an amniotic band might have impacted the tissues below the skin
- Magnetic Resonance Imaging (MRI) or other scans to further understand how the amniotic band could have influenced or injured blood vessels and nerves
- Other deeper tests such as targeted ultrasound (3D), Doppler Blood Flow Study or a Fetal Echocardiogram
What to do in case your baby is diagnosed with ABS?
After your doctor undertakes a thorough examination of your baby’s condition, he will discuss potential treatment options. It is very likely that fetal surgery will be recommended for extreme cases, whereas mild cases may be treated with reconstructive surgery after giving birth.
In general, there are a variety of treatment options for ABS:
- Supportive therapy targeted at alleviating the symptoms (for instance oxygen or breathing support for babies with improperly developed lungs)
- Reconstructive or plastic surgery for developmental abnormalities, such as webbed fingers or feet and cleft lip
- Clubfoot treatment via the Ponseti method
- Occupational therapy so that the children are able to practice, and master, using their recovered fingers, toes, arms and legs
- 3D-printing prosthetics to replace the abnormally formed limbs
- Fetal surgery, for really extreme cases of ABS in unborn babies. Fetal surgery involves severing the amniotic bands via a laser or sharp surgical apparatus while the baby is still in the amniotic sac. Normally, thorough consideration is given before choosing this option as there may be further complications afterwards.
*This story is from our archives.
(Source: Women’s Weekly, TNP, amnioticbandsyndrome.com, University of San Francisco, rarediseases.org, Very Well Family, Seattle Children’s Hospital, 123radiology )
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