"In the two days she spent with us Zahra touched our lives in ways we could never imagine possible. We accept that she has physically left this world but her spirit will live within our hearts forever.  Her memory will never fade. We will always be the parents of adorable twin girls." Note from the website owner: Although when you read to the end of Kerry’s story you will see that Zahra did not have trisomy 13.  We’ve added this journey because it is very interesting that Zahra had all the markers of trisomy 13. Kerry dealt with all the professional opinions of what life with a trisomy 13 child would be like, including the usual push for termination. Kerry reached out for support from families on several message boards and we became familiar with  her story and with prayer and hope waited for her children to come to her arms.  At the end of all this I was very curious as to why the 5 specialists concluded trisomy 13 prenatally.  Here is Kerry’s response: "I never originally had an amnio as I was not in a high risk age group, I'm only 33 yrs old. Once we reached the 20 week scan and had the suggested diagnosis having an amnio to confirm came up but I did not want to risk miscarriage and also what would be would be, I couldn't change what Zahra might have had. Thus we had the analysis done on the cord blood once I gave birth. They could have taken the blood from Zahra after birth but only if she was alive, otherwise they extract it directly from her heart and I couldn't bear that thought. So basically T13 came about purely from the ultrasound, mainly the assumption she had the severe cleft lip/pallette and the other abnormalities. These abnormalities are all listed as symptoms of T13, so the 5 specialists we consulted presumed it must be T13. Interesting hey!" Yes, I find this very interesting and wonder how similar Kerry’s story may be with others who have been urged to terminate a twin with a syndrome and  similar abnormalities. Thank you Kerry for sharing your Story. Your courage and strength through all of this has been inspiring. May your family receive many blessings from your heavenly Angel Zahra as well as your living Angel Raine. ~ThereseAnn

Australia – Singapore - Twins, one twin with abnormality of Holoprosencephaly and it’s related symptoms – proboscis

Hi, My name is Kerry and I am an Australian who is living in Singapore with my husband and 3 year old daughter. The following is a story of my journey over the last 8 months…..from conception to birth and of the struggles my family have faced with having a prenatal diagnosis of Trisomy 13.
 
During this rollercoaster of a year my husband and I decided to be very honest with our family and friends and communicated to them all our medical findings as well as all our thoughts and feelings. For us this approach felt ‘right’ and our family and friends were appreciative of our honesty. We know this approach is not attractive to everyone but at least it stopped the ‘Chinese Whispers’ effect and ensured everyone had the correct information regarding our position and most importantly that they had the correct medical diagnosis.
 
Our journey started with the news that we were having twins, we have no history of twins in either family nor were we having any fertility treatments. At first I was scared of how I was going to raise three children in a country with no family for support but soon I warmed to the idea of being a ‘twin mummy’ and embraced the future of our family quickly multiplying to five.
 
At our 20 week scan we discovered we were having two more girls. We decided to name them Raine and Zahra. Raine had developed very well and meet all the medical requirements for a baby at 20 weeks……. she sure had a good position on mum’s bladder! Zahra however had some problems with her development and as a result did not flourish as we would have hoped for….she still packed a whopper of a kick into mum’s side though!
 
Zahra was prenatally diagnosed with Trisomy 13, also called Patau’s Syndrome. We soon learnt that trisomy 13 is a congenital (present at birth) disorder associated with the presence of an extra copy of chromosome 13. The extra chromosome 13 causes numerous physical and mental abnormalities. The severity and symptoms of Trisomy 13 vary from extremely serious conditions to nearly normal appearance and functioning. In Zahra’s case the results were apparently severe and we were told they resulted in internal and external abnormalities. We were also told that it is a terminal condition and if babies survive the gestation period they are unlikely to survive longer than a few days or weeks, or even hours.
 
At this 20 week scan and the days that followed specialists told us the following…..Zahra firstly had Holoprosencephaly. This is a disorder caused by the failure of the forebrain to sufficiently divide into the double lobes of the cerebral hemispheres. The result is a single-lobed brain structure. Secondly, she was diagnosed with Microcephaly, which is an unusually small sized head. These two problems resulted in Zahra having facial defects such as her eyes were not spaced apart; they were only situated 3mm apart in the middle of her face. Her nose was placed above her eyes and she had a severe cleft lip. The remainder of Zahra’s body and organs appeared to be normal. However, if she was to survive the gestation period she would not be able to feed and would have severe mental retardation.
 
For us it felt like the earth had just opened up and swallowed us whole. Tears streamed down our faces as we tried to digest this news. Time stopped. My body felt numb. My mind spun with the usual “why us”, “what did I do wrong”, “I shouldn’t have had that glass of wine at dinner” and even “I shouldn’t have eaten this and that”. Still another part of me held out for hope in thinking that we could beat this prognosis.
 
In researching this condition we consulted a fetal specialist and he provided us with our options for moving forward. Sadly we were told that all options would result in the loss of our daughter Zahra.
 
One option was to let nature take its course and allow Zahra to continue growing. While this was the most appealing option to me, it could have presented a danger to Raine as it would place my body in a position where premature labour could arise. If Zahra did go full term we then had to consider her quality of life, however short that may be. We also consulted a pediatrician to explain what would happen to her after birth.
 
Our second option was Selective Fetocide, a technical term for termination of a fetus. Given the quality of life we were to expect Zahra to have and the confirmation that she would experience considerable pain this alternative was a strong consideration. As things are never easy this option was not that simple in our situation as we needed to ascertain if both Raine and Zahra were sharing the placenta. If so then there was a risk that the procedure could affect the healthy twin resulting in two losses. We did eventually have our doctor verify 100% that the placentas was indeed separate as we believed they were at the 12 week scan. Another complication with this process was that in Singapore you must seek written permission from the government to have the procedure carried out. After 24 weeks it is even harder to gain permission and is on a case by case review, so time unfortunately become a slight factor in us moving forward.
 
Over the following weeks we collected much information and I kept busy seeking support group details (of which Singapore has none) and collating as much data as I could find about Trisomy 13 so we can make the best informed decision about Zahra and Raine’s future. We continued to rejoice in the miracle which was our three adoring baby girls. We believed that everything happens for a reason and that we would all emerge from this time a stronger family.

At 23 weeks gestation we made the decision to continue the twin pregnancy and allow nature to take its course. This decision was based on much research, soul searching and infinite love for our children. At that late stage in the pregnancy we focused on what we thought was the most important question, what decision will leave us with no or little regret. We personally felt we could not live with a lifetime of "What If's". This way we would know for sure what life had dealt us.

We were unsure of how our story would unfold and planned to tackle the issues as they arose. As we were aware of Zahra's condition, we could at least put some action plans into place to help us with the many ways the pregnancy and birth may unfold. In some respect this seemed quite morbid but if we could hope for the best but plan for the worst, our bases should be adequately covered.

We decided to remain in Singapore but depending on the support required we may have had to revisit this decision. We knew that our daughter Zahra, if she survived gestation and a proposed natural delivery would be different in many ways, both mentally but more so physically and we were fully prepared for this challenge.  As the saying goes “We come to love not by finding a perfect person but by viewing an imperfect person perfectly". How can a parent not love and see beauty in their own creation?

We also decided that should Zahra survive, that the level of care be "Comfort Care Only". Meaning that we shall do our best to ensure she is in no pain or discomfort but that we shall not use 'high level' intervention, thus prolonging the inevitable. We felt that this decision would be the best for all concerned and that Zahra could continue on her journey, when she was ready to do so.  We continued to step longingly in this process and imagine the moment when we would hopefully be able to hold our three girls in our arms, for however long that might be.

At my 28 week scan Raine was doing well, development was good; she was a very healthy baby and a great size. I enquired about Zahra's condition, asking for any detail of new developments. I needed all the facts as they developed so I could decide what I wanted to do when and if I had an opportunity at birth. The ultrasound lady didn't say too much but did mutter out something not looking good with Zahra's kidneys and her weight was very low. No more explanations were forthcoming and I guess I never really thought there would be either, given the culture here is Asia. The reality was though that it really drove home to me that Zahra would most probably die not long after birth, given the brain issue. Now I never envisaged that she would live for any lengthy period of time but I did hope that we may have been able to have at least a couple of days with her. Time to form memories, take photos, have some keepsakes, these are things I knew I needed.  After a while the ultrasound lady showed us the screen and we watched as Zahra played with her hands around her face for a couple of minutes. She then proceeded to suck on her hands which is a trait from my husband’s side. Seeing her play like that drove home again that she is a real little baby, a normal baby and she was my baby and I just didn’t want her to leave me! Well, you can guess how I must have been feeling after that session.
 
I sank into a depression, grief, fed up with life, wish I wasn't pregnant, married or a mother psychosis. Luckily my fantastic husband’s response was very supportive by NOT telling me to pull my head in, for which I was eternally grateful. Luckily I did snap out of it a few days later, thank god.
  
Through all of this my other major challenges had been with my physical health. I was in such pain and discomfort with the pregnancy I was limited to the physical tasks I could do. This was difficult for me to swallow as I am an extremely independent woman. I wake up in the morning and not half an hour later I was exhausted and needed to lay down for a rest. I knew that this was normal for a twin pregnancy but I felt lazy and pathetic.....yes harsh words but nonetheless true. I attended a 'Twins Association' meeting and interrogated the other mums and mums-to be on their physical status. Thank goodness they all said the tearing, burning, cramping pains were all normal plus the pins and needles in the torso and legs, varicose veins, SI nerve pains...I could just go on and on .......Anyway I felt very sorry for myself and honestly just didn’t know how I was going to go another  couple of months.
 
It was a difficult time by all accounts but I tried to rest more and relax mentally to ensure I did not bring on early labour from stress and anxiety. Around this time I wrote my birth plan and the after birth plan for care for Zahra. I hired a Doula to help me during labour and delivery and to make sure we collected all the memories we wanted and that she could also advocate for me in the hospital.
 
On the 15th May 2006 we were pleased to announce the arrival of our two beautiful baby girls, Raine and Zahra.  Labour began at about 12:05am and was over by 5:08am. It was a relatively short labour but in the words of my husband “boy was it intense”! Officially the girls arrived five weeks and three days earlier than they were supposed to and about three weeks later than I had hoped! Although small in size they both appeared to be physically strong and ready to face the world. Even though Zahra had a terminal condition and it was difficult to know how much time we would have with her we made the most of it.  One thing was for sure; she was a real fighter and had within hours of entering our lives etched her way indelibly into our hearts. Raine was equally gorgeous and full of gusto.
 
It had been a rollercoaster pregnancy and birth which saw us experience every emotion from tremendous joy to deep grief and sadness. Sadly Zahra grew her wings and passed away on 17th May at 12.34pm.
 
Zahra was a strong girl who exceeded the expectations of all around her. She defied odds by surviving gestation and birth; she breathed on her own and consumed her mother's milk. Doctors could only marvel at her pure determination to stay in this world and at her resilient character when they tried to make her do something she didn't want any part in!
 
When Zahra was born she was placed immediately onto her mother's chest where it was revealed that she did not have some of the problems that the Doctors had described in the ultrasound. Zahra had a perfectly rounded mouth, although very tiny, there was no cleft lip/palette. She did have a Proboscis which appeared from her forehead but just looked like a nose in the wrong spot! She had two eyes with very long lashes, a Family trait but was unable to show us the color, we are still arguing over whether they would have been blue or brown.
 
Zahra had an oval shaped face and a very long body. She was born breech and had the usual hip dislocation as with all breech babies. Her body from the neck down was perfect, her heart beat as strong as a healthy newborn and her lungs were fine. She did wees and poos like all babies and had all her fingers and toes. She could hear and responded to her mother and father's voice, turning her head to the direction they were in. She was also comforted by us, relaxed and happy when in our arms or cuddled close to our bodies.
 
Zahra's cause of death was recorded as 'Holoprosencephaly', the forebrain not dividing. She was born without nostrils which made it very hard for her to get enough oxygen. This is ultimately what caused her passing. All newborn babies breath through their nostrils, they do not know how to breath through their mouths for some time, their tongues roll backwards blocking the airway. Zahra upon birth had a very small tube placed in her mouth to open the airway and as a result she was able to breath on her own as her heart and lungs were exceptionally strong. Zahra coped fine with this arrangement for a couple of days but as it is unnatural to have a tube in your airways she developed secretions that started to block the tube and would eventually cause her discomfort. After all details and options were taken into consideration we removed the tube and allowed Zahra to decide on her own destiny.
 
With Zahra in our arms she continued to breath on her own with no tubes for just over two hours, once again amazing the nursing staff. Her heart was just not going to quit quite so easily and she only started to deteriorate in the last half an hour. As we hugged and kissed her and Raine we cemented our love for our twin girls and formed a bond that can never be severed by time or experience.
 
After being told of Zahra's condition in week 20 of my pregnancy, we thought long and hard about the options put before us.  The decision we made is one we will relish forever. In the two days she spent with us Zahra touched our lives in ways we could never imagine possible. We accept that she has physically left this world but her spirit will live within our hearts forever.  Her memory will never fade. We will always be the parents of adorable twin girls.

Kerry Abdallah kerry.abdallah@synertecasia.com
  
PS…... We did have Zahra’s Cord Blood tested for any Trisomy’s and guess what…..the results came back negative. She did not have Trisomy 13 after all just the abnormality of the 'Holoprosencephaly' and it’s related symptoms. Just goes to show that the medical profession isn’t always right!