Psalm 139Today, we saw our Clinical Geneticist and Genetic Counselor. We prayed for peace and understanding as we met with the experts, and prayed for everyone involved in our care to be as thorough as they possibly can. Dr. B explained to us that they don't usually see a cystic hygroma beyond 7 or 8mm, which is already quite large, but to see a 17mm on an ultrasound could mean there might have been an error in the reading the sonogram. If there was no error, then miscarriage is highly likely. She explained that with any regular pregnancy, risk of chromosomal syndrome is 2-3%. With a cystic hygroma, our risk of a chromosomal syndrome increases to 50%. In addition to that, this diagnosis could be compounded with heart or skeletal defects, or a different type of medical condition, raising the pregnancy risk to at least 75%.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
On one hand it is reassuring that it wasn't anything that we have done that could have caused this to happen, but on the other hand, we couldn't believe that this morbid coincidental circumstance has fallen upon us.
From what we learned about chromosomal syndromes, our child could have Downs, Trisomy 13, Trisomy 18, or Turners.
Trisomy 13, 1 in 5000 live births; if baby survives pregnancy, will have multiple organ defects and unlikely to survive beyond 1 years old.
Trisomy 18, 1 in 5000-10000 live births; if baby survives pregnancy, will have severe developmental delay, varying defects and unlikely to survive beyond 1 years old.
At this point, Downs or Turners compared to Trisomy 13 and 18 seems like a dream.
One thing we know for sure, is that we are guardians of the things on earth that God has granted to us. We respect the life He gives to us, and He knows when to take this life back to heaven with Him. We remember that although we may not be able to see our baby, or count the number of days he/she has, God already saw our baby's unformed body, knew how many hairs will grow, how many days baby will be on Earth, and already loves him/her.
From what we learned about chromosomal syndromes, our child could have Downs, Trisomy 13, Trisomy 18, or Turners.
Trisomy 13, 1 in 5000 live births; if baby survives pregnancy, will have multiple organ defects and unlikely to survive beyond 1 years old.
Trisomy 18, 1 in 5000-10000 live births; if baby survives pregnancy, will have severe developmental delay, varying defects and unlikely to survive beyond 1 years old.
At this point, Downs or Turners compared to Trisomy 13 and 18 seems like a dream.
One thing we know for sure, is that we are guardians of the things on earth that God has granted to us. We respect the life He gives to us, and He knows when to take this life back to heaven with Him. We remember that although we may not be able to see our baby, or count the number of days he/she has, God already saw our baby's unformed body, knew how many hairs will grow, how many days baby will be on Earth, and already loves him/her.
We are aware of the pain that DY and myself will experience whether I lose my baby through miscarriage or at birth, or if my baby has to endure multiple surgeries... although we cannot imagine how great this pain will be, how long it will take us to recover... but we need to keep thinking positive, and believing that good will come out of it all, and we are already seeing bits of God's grace and love ever since we received such bad news last week.
We proceeded with our ultrasound (U/S), first with the U/S student, then his preceptor, then the radiologist herself came in to take more pictures. When no one was in the room, I took sneak peaks at the sonograms, and I saw, in baby's profile, two enormous cysts extending from baby's forehead, to the neck, the back, towards the rump. I knew that there was no mistake in the first U/S, and if anything, the cyst looked bigger and unfortunately septated. In our research, we learned that septated (walled) cystic hygroma are more rare, and less likely to resolve than non-septated cystic hygroma. We didn't expect good news from the report.
When Dr. B saw us again to discuss the results, she asked if I had anything to drink or eat, if I wanted any juice or cookies... I said I was fine, but when we sat down, she insisted. I knew it was worse than she imagined. The radiologist reviewed all photos with her. Not only does the cystic hygroma appear as a cluster of grapes, measuring at 17.8mm, the radiologist had trouble viewing the end of the spine, and indicated that baby's limbs are shorter than they should be. This means baby possibly has some sort of skeletal dysplasia; sadly, majority of skeletal dysplasia are related to spontaneous gene mutations that are lethal for the developing baby. At this point, choosing a non-invasive screening blood test such as NIPT, which only detects Down's, 13, 18 with decent accuracy, is not really useful. My heart sank when Dr. B said the chances of miscarriage is higher than we thought before the U/S.
Tonight we shared such news and our decisions with both our parents and my little brother. My sister and DY's other brothers are in HK so we haven't had the chance to update them ourselves. We can see and hear sadness in their eyes and voices, and they wished nothing the best for us and reminded us to take it all one step at a time.
We proceeded with our ultrasound (U/S), first with the U/S student, then his preceptor, then the radiologist herself came in to take more pictures. When no one was in the room, I took sneak peaks at the sonograms, and I saw, in baby's profile, two enormous cysts extending from baby's forehead, to the neck, the back, towards the rump. I knew that there was no mistake in the first U/S, and if anything, the cyst looked bigger and unfortunately septated. In our research, we learned that septated (walled) cystic hygroma are more rare, and less likely to resolve than non-septated cystic hygroma. We didn't expect good news from the report.
When Dr. B saw us again to discuss the results, she asked if I had anything to drink or eat, if I wanted any juice or cookies... I said I was fine, but when we sat down, she insisted. I knew it was worse than she imagined. The radiologist reviewed all photos with her. Not only does the cystic hygroma appear as a cluster of grapes, measuring at 17.8mm, the radiologist had trouble viewing the end of the spine, and indicated that baby's limbs are shorter than they should be. This means baby possibly has some sort of skeletal dysplasia; sadly, majority of skeletal dysplasia are related to spontaneous gene mutations that are lethal for the developing baby. At this point, choosing a non-invasive screening blood test such as NIPT, which only detects Down's, 13, 18 with decent accuracy, is not really useful. My heart sank when Dr. B said the chances of miscarriage is higher than we thought before the U/S.
Tonight we shared such news and our decisions with both our parents and my little brother. My sister and DY's other brothers are in HK so we haven't had the chance to update them ourselves. We can see and hear sadness in their eyes and voices, and they wished nothing the best for us and reminded us to take it all one step at a time.
Tonight I just cried out to the Lord, remembering an old song that we used to sing at church:
Psalm 121
1 I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
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