12-Week Scan Shock: Our Difficult Wait for Answers
Our 12-week scan was supposed to be one of the happiest milestones of the pregnancy. Instead, a phone call telling us that our baby had a 1 in 150 chance of Down’s syndrome placed everything on hold.
This is our personal experience of receiving a higher-chance screening result after the 12-week scan, attempting to have chorionic villus sampling, choosing an amniocentesis and waiting for the results.
It is the next part of our pregnancy story following Two Lines, Two Babies. We had already experienced an unexpected and emotionally complicated beginning to the pregnancy. We hoped the 12-week scan would mark the point when we could finally relax.
We went into the hospital expecting a routine 12-week scan. We left believing everything was probably fine. A few days later, one phone call changed the entire pregnancy.
In This Article
- Our 12-week scan and nuchal translucency measurement
- The phone call and our 1 in 150 result
- Choosing between CVS and amniocentesis
- Why our CVS procedure could not go ahead
- Why the pregnancy felt completely on hold
- What having an amniocentesis was like
- Waiting for our amniocentesis results
- Our 20-week anatomy scan and finally feeling relieved
Our 12-Week Scan and Nuchal Translucency Screening
We went to the hospital for our 12-week scan expecting the usual pregnancy checks and another opportunity to see our baby on the screen.
The sonographer carefully examined the baby and completed several measurements. One of these was the nuchal translucency measurement, which looks at the fluid at the back of the baby’s neck.
This measurement formed part of our screening for three chromosome conditions: Down’s syndrome, Edwards’ syndrome and Patau’s syndrome.
Because of the circumstances surrounding our earlier twin pregnancy, we had been told that the usual NIPT blood test was not available to us. Instead, information about the pregnancy and the measurements taken during the scan would be combined to calculate our chance of one of the conditions.
Before leaving, we were told what would happen next. If our screening result showed a higher chance of one of the chromosome conditions, someone would telephone us within five working days.
If we didn’t hear anything, that would generally be good news. A letter would then arrive confirming the result.
The scan itself appeared to have gone well. It was probably the only scan during the pregnancy where we came away with genuinely good pictures of the baby. For the rest of that day, everything felt positive.
The Phone Call After Our 12-Week Scan: A 1 in 150 Result
Our screening result was 1 in 150.
We were told that this was directly on the threshold for being classed as a higher-chance result.
On the Monday, while we were both at work, the phone call came.
We were told that our baby’s screening result showed a 1 in 150 chance of Down’s syndrome.
We were also told that this result sat directly on the threshold used to determine which pregnancies were considered to have a higher chance. Had the result been 1 in 151, we would not have fallen into that category.
Hearing the words “higher chance” or “high risk” was incredibly difficult to process. A screening result is not the same as a diagnosis, but in that moment we didn’t know what would happen next or what the result might mean for our baby.
The midwife on the telephone became noticeably quiet. That silence made the news feel even heavier.
We had walked out of our 12-week scan believing everything was probably fine. Suddenly, the happiness and relief we had begun to feel were replaced by uncertainty.
We later received another telephone call to discuss our options for diagnostic testing.
CVS or Amniocentesis After Our 12-Week Scan
We were offered two possible diagnostic tests following our higher-chance Down’s syndrome screening result: chorionic villus sampling and amniocentesis.
Chorionic Villus Sampling
Chorionic villus sampling is normally shortened to CVS. We were told that the procedure would involve inserting a needle through the abdomen and taking a small sample of cells from the placenta.
The main advantage for us was that CVS could potentially be performed sooner, meaning we might receive answers earlier in the pregnancy.
Amniocentesis
An amniocentesis would involve inserting a thin needle through the abdomen and removing a small amount of amniotic fluid from around the baby.
However, we would have to wait until later in the pregnancy before the amniocentesis could be performed.
We initially chose CVS because we wanted answers as quickly as possible. The thought of continuing the pregnancy without knowing felt unbearable.
Both tests came with a miscarriage risk. At the time, we were told that the risk associated with either procedure was approximately 1 in 200.
That made the decision much more difficult. We had been given a 1 in 150 screening result for Down’s syndrome and had to weigh that against the risk we had been given for the diagnostic procedure.
In the end, we decided that receiving a clearer answer was the right decision for us. It was an intensely personal choice and not one we made lightly.
Why CVS Could Not Go Ahead After Our 12-Week Scan
When the day of the CVS arrived, we returned to the hospital and waited a long time to be called in.
The doctor began by scanning the baby and checking the position of the placenta. My partner was then asked to empty her bladder before being scanned again.
Unfortunately, the placenta was positioned behind the baby. Reaching it would have required the needle to pass through, or dangerously close to, the baby.
The doctor explained that she could not safely perform the CVS.
We were given another decision to make. We could return the following week and hope the placenta had moved into a more accessible position, or we could wait until around sixteen weeks and have an amniocentesis.
We decided not to keep returning to the hospital and hoping that the position had changed. Instead, we chose to wait for the amniocentesis.
Why Pregnancy Felt on Hold After Our 12-Week Scan
What made the timing especially difficult was that we had only just begun telling people about the pregnancy.
After our 12-week scan, we shared the happy news with people at work. Only a couple of days later, we were trying to understand what a 1 in 150 chance of Down’s syndrome meant for our family.
We had gone from announcing the pregnancy to feeling as though we couldn’t celebrate it at all.
During the weeks that followed, everything felt paused. We didn’t feel comfortable buying anything for the baby or making plans for the future.
It was difficult to let ourselves become too excited when we didn’t know what the diagnostic test might show or what decisions we might eventually have to make.
Friends around us were having babies and enjoying their pregnancies. We were happy for them, but it made our own situation feel even more isolating.
We wanted to be enjoying the same stage of pregnancy. Instead, our thoughts were dominated by hospital appointments, miscarriage risks, test results and possible outcomes.
It was an extremely stressful period for both of us and for our families. Everyone tried to remain positive, but underneath that positivity was the same uncertainty we were carrying.
Our Amniocentesis Experience After the 12-Week Scan
At around sixteen weeks pregnant, we returned to the hospital for the amniocentesis.
By this point, several weeks had passed since our 12-week scan and the original screening result. We desperately wanted an answer, but we were also worried about the procedure itself.
Beforehand, we had imagined something much more dramatic. Films often depict amniocentesis using an enormous and frightening-looking needle. The needle used for the actual procedure was very thin.
The doctor used the ultrasound scan to carefully guide the needle through my partner’s abdomen.
The needle was left in position briefly while a small container was attached. The amniotic fluid gradually passed into the container before it and the needle were removed.
My partner couldn’t watch the needle going into her stomach. I watched the procedure on the screen instead.
It was not a pleasant experience, but the procedure itself was calmer and less dramatic than either of us had imagined.
A Doctor We Will Always Remember
The doctor who performed the scan and amniocentesis made an enormous difference to the experience.
She was calm, kind and reassuring from the moment we entered the room. She took time to explain what was happening and made my partner feel as comfortable as anyone could feel in that situation.
She also spent extra time scanning our baby, checked the sex for us and showed us as much as she could.
It was a frightening appointment, but she managed to bring some warmth and happiness into it. My partner trusted her so much that she wished the same doctor could have delivered our baby.
We will always remember her kindness. During one of the most difficult moments of the pregnancy, she made us feel genuinely cared for rather than simply processed through another medical procedure.
Waiting for Results After Our 12-Week Scan
After the amniocentesis, another difficult wait began.
We had the procedure on the Friday before the August bank holiday weekend. Ordinarily, we had been told that the initial results might be available by Monday.
Because it was a bank holiday, we knew we would have to wait longer.
Those extra days felt endless. Every telephone notification made us wonder whether the results had finally arrived.
Finally, on Tuesday afternoon, the telephone rang.
The results had not identified Down’s syndrome, Edwards’ syndrome or Patau’s syndrome.
The relief was enormous.
What should have been a reassuring 12-week scan had turned into several weeks of worry, difficult decisions and hospital appointments. It wasn’t until more than sixteen weeks into the pregnancy that we finally felt able to breathe again.
Our 20-Week Anatomy Scan and Finally Feeling Relieved
Not long afterwards, we returned for the 20-week anomaly scan, which is also commonly called the anatomy scan.
This was probably the best scan of the entire pregnancy. We had already received the reassuring amniocentesis results, and everything examined during the scan appeared to be developing as expected.
The sonographer carefully checked our baby’s limbs, fingers, toes, face, heart, bladder, stomach and spine. She talked us through what she could see and repeatedly reassured us that everything looked good.
Our baby wasn’t always in the ideal position for the checks. The examination bed was tilted and my partner had to move and wiggle around to encourage her to turn.
After everything we had experienced, even those awkward moments felt almost enjoyable.
For the first time since the phone call following our 12-week scan, we could properly look forward to what was coming.
We started buying things for our baby. We began making plans. Most importantly, we finally allowed ourselves to feel excited again.
That was also when we began working out what we genuinely needed. Our Amazon Baby Wishlist guide explains how we organised the baby products we planned to buy and what we learned from setting the list up.
The pregnancy had felt paused for weeks. After the amniocentesis results and our 20-week scan, it finally felt as though someone had pressed play.
Frequently Asked Questions About Our 12-Week Scan
What Did Our 12-Week Scan Result Mean?
We were told that our 12-week scan screening result showed a 1 in 150 chance of our baby having Down’s syndrome. This placed us directly on the threshold for being offered further diagnostic testing. It was a screening result rather than a diagnosis.
Why Did We Initially Choose CVS Instead of Amniocentesis?
We initially chose chorionic villus sampling because it could be carried out sooner. After the uncertainty created by the screening result, receiving answers as early as possible felt important to us.
Why Couldn’t Our CVS Procedure Be Performed?
Our baby was positioned in front of the placenta. The doctor explained that she could not safely reach the placenta without the needle passing through or too close to the baby.
What Was Having an Amniocentesis Like?
The needle was much thinner than we had imagined. The doctor used an ultrasound to carefully guide it and collected a small amount of amniotic fluid. The procedure was uncomfortable and emotionally difficult, but calmer and less dramatic than films had led us to expect.
How Long Did We Wait for the Amniocentesis Results?
Our amniocentesis took place on the Friday before the August bank holiday. We received the telephone call with our initial results on the following Tuesday afternoon.
When Did We Begin Enjoying the Pregnancy Again?
We felt enormous relief after receiving the amniocentesis results. However, it was after the reassuring 20-week anatomy scan that we truly began making plans, buying baby items and allowing ourselves to feel excited again.
Official Information About the 12-Week Scan and Diagnostic Testing
This article describes our personal experience. For official medical information, the NHS explains what happens during a 12-week scan and provides a separate guide to screening for Down’s syndrome, Edwards’ syndrome and Patau’s syndrome.
The NHS also has detailed information about chorionic villus sampling and amniocentesis, including why the tests may be offered and what the procedures involve.
Related Posts From Our First-Time Family Journey
- Two Lines, Two Babies – the beginning of our unexpected pregnancy story.
- How to Create an Amazon Baby Wishlist – how we organised the baby products we needed once we finally felt able to start preparing.
This article describes our personal experience of pregnancy screening and diagnostic testing. The options, terminology and risks discussed with you may be different. Always speak to your midwife, doctor or maternity team about your individual circumstances.
