The 20-week anatomy scan is a major milestone for expectant parents. Well it’s 2020 so it would be another milestone that I would attend alone—Facetime, calls, photos or video recordings not allowed.
Despite the circumstances everything looked great to me on the scan. I got to see baby moving around and all ten fingers, all ten toes, arms, legs, ears, lips, nose, eyes…all the things you’d hope to see. Baby was even in a position that the tech was unable to clearly identify the gender which worked for us since we’re waiting for the surprise anyway. From what I could tell they were able to see everything they needed to see and Sponge (our baby’s nickname) is going to be a cutie! I even got three photos to take home and show LeBraun. :)
Where we are in Canada the ultrasound clinics are separate from the physicians so the results are sent afterwards for physicians to review which sometimes takes a couple days and depending on their schedule they will definitely call with concerns, but still most of the time call just to let you know everything is fine. So when our doctor called it wasn’t out of the ordinary.
He said everything looks great except the abdomen circumference is a bit smaller than they would expect for 20 weeks; however, it’s most likely just the way the baby was sitting for the measurement that would give the tech a skewed result. It’s nothing to worry about but scheduled us for another scan in three weeks just for peace of mind. No need to panic over nothing, right?
During the weight we had our next in-office appointment. LeBraun asked our doctor to please call us after the next scan whatever the results may be.
So our next scan rolls around and Sponge looks adorable per usual! The tech essentially did another anatomy scan checking all the different pieces and getting all the measurements. Plus I got more pics to show LeBraun. Note: Techs are typically not allowed to tell you anything diagnosis-wise. They just kind of point of stuff like “there’s a foot” or “your baby is wiggly today.”
On that next Monday I got a call from the clinic to schedule a phone call with our doctor later in the week. I wrote it down and then started to think about it—wait—was he calling with concerns or was he calling because LeBraun asked him to call either way? If it was urgent would he not have just spoke to us when the clinic called versus scheduling an appointment later in the week? No need to panic yet…
My heart sank immediately when our doctor called and asked to be put on speaker phone with LeBraun as well. I knew something was wrong. He said your baby has something called Asymmetrical Intrauterine Growth Restriction. Their abdomen circumference is in the 5th percentile for their age, anything under 10th percentile is cause for concern. He talked to us for about 15 minutes. I have no idea what he said as I was in a weird fog/shock. He said a specialist will call you soon to further discuss the diagnosis. He hung up the phone and I cried. What does it all mean? Will our baby be okay? Are we going to lose our baby? Why is this happening?
We were then scheduled for a 90 minute ultrasound and meetings with Maternal Fetal Medicine and Perinatologists at BC Women's and Children's Hospital in Vancouver for the following week. Our specialist told us to pack in anticipation of spending the remainder of our pregnancy in Vancouver. There was a very real possibility of delivering our little one within the next couple weeks (2+ months early!) which would mean living in a short-term rental while our baby lived in the NICU. Definitely not how we saw our first pregnancy going…but then again it was 2020 so it seemed about right.
From here I’ll spare you guys all the details. It was so many ups and downs. One week our ultrasounds would be so positive then the next we would be sent to the emergency room for extra monitoring.
Each week our goal was just to make it to the next week, giving our baby more time to develop. We made it past 30 weeks which meant we could go back home but would have to deliver at our second closest hospital in the town over. Then we made it past 34 weeks which meant we could deliver at our local hospital. That was a HUGE sigh of relief. Our little one is a CHAMP!
So what did our IUGR diagnosis actually mean?
Since there were no concrete results as to what caused our IUGR, doctors were basically monitoring for the point at which our baby would do better (grow better) outside rather than in the womb. At the point she was not growing or getting what she needed anymore we would deliver. This kept us constantly on edge. Would our NST go well? Would we be sent directly to the hospital? Would we be heading there tomorrow? In two weeks? In two months? Essentially anytime after our diagnosis our baby could be delivered. We kept our bags in the car.
Obviously babies born very early, specifically before 35 weeks, have a very different journey than those born around term. There are different levels of NICUs with 4 being the highest. Our local hospital was a level 2 meaning they would be able to care for babies born after 34 weeks. Our next closest hospital could handle babies born after 30 weeks. Anytime before that we would have to deliver at the specialist provincial hospital in Vancouver which meant we had to initially pack to stay in Vancouver, anticipating a 2+ month NICU stay.
Each passing week was a blessing. Our baby was growing, albeit slower, but growing. And each week we got closer and closer to delivering closer to our home.
Since our IUGR cause was unidentified, doctors would run tests once baby was born. From there depending what they found we may have needed to be transferred to a larger hospital for care.
Our “ultimate legend goal” was set at 37 weeks because baby’s development is basically complete. The final weeks are mostly for adding weigh/filling out which most IUGR babies aren’t doing anyway so they will get better nutrition on the outside.
FAQs
What is IUGR?
Intrauterine Growth Restriction (IUGR) is when a baby in the womb does not grow as expected meaning the baby is not the size expected for its gestational age.
There are two types of IUGR—1) Symmetrical meaning all parts of the baby's body are growing similarly small in size, and 2) Asymmetrical meaning the baby's head and brain are the expected size, but the rest of the baby's body is small.
Sponge’s diagnosis was Asymmetrical IUGR which means that her nutrients is dedicated to the most important developments—the head and brain. Her abdominal circumference (AC) was measuring under the 5th percentile.
Any measurement under the 10th percentile is considered high risk, under the 5th percentile is considered severe, and under the 2nd percentile is considered critical.
When/How is IUGR diagnosed?
The majority of cases are identified between 34-36 weeks by ultrasound.
We went for our 20 week anatomy scan and received a call from our physician the following day letting us know that the abdominal circumference was measuring in the 2nd percentile; however, he was’t worried because it was most likely a weird measurement from the ultrasound tech. We were scheduled for another ultrasound three weeks later. Our physical contacts us after this ultrasound and briefly explained that our baby had IUGR and that a specialist would be contacting us and taking over our care.
The short and short—our diagnosis was considered “critical” because it was diagnosed at 26 weeks and it was well below the 10th percentile.
What causes IUGR?
Every case is different because IUGR can be the result of many things, most commonly one or a combo of the following:
- TORCH Infections. This is an acronym for different infections the mom may have that have been transferred to baby, all of which can be tested for.
- Chromosomal Abnormalities. Prenatal testing like NIPT can rule these out although they’re not 100% accurate.
- Single Gene Disorders. Ultrasounds may be able to identify the physical presentations of many diagnoses such as cystic fibrosis, Tay-Sachs and sickle cell anemia among others. An Amniocentesis is a procedure in which amniotic fluid is removed from the uterus for testing or treatment. This test can help identify single gene disorders.
- Placental Insufficiency. This is the most common cause. The placenta is the tissue that brings nutrients and oxygen to the developing baby. Either the placenta may not be delivering enough nutrients to the baby or have an issue with blood flow in the umbilical cord which connects the baby to the placenta.
- Constitutional. The baby may just be small.
What can you do to prevent or correct IUGR?
Unfortunately nothing which is the last thing you want to hear as a parent. You feel completely helpless. Just focus on your health, take your prenatal and of course avoid smoking, drinking, and other harmful activities.
How is IUGR monitored?
I’m sure it’s different for everyone, but since our IUGR diagnosis was considered “critical” we did the following:
- Two nonstress tests (NST) per week. A NST is a common tests where the baby’s heart rate is monitored to see how it responds to its movements.
- A weekly Biophysical Profile (BPP) Ultrasound. A BBP scan takes up to 30 minutes in which the techs watch for and give scores (2 points per) to each based on how the baby is doing—fetal heart rate, fetal breathing, fetal movement, fetal muscle tone, and amniotic fluid level.
- A growth ultrasound every two weeks. Two weeks is enough time for an actual difference in measurements can be identified.
What does IUGR mean for baby after birth?
Since the cause of our diagnosis was unidentified doctors would run test once our baby was born. Then we’d move forward based on their findings.
Development-wise, babies born with IUGR will likely catch up in size, normal height and weight by around 2 years of age. As of our 4 month appointment, Sponge was in the 30 percentile in weight.
Fortunately our little princess passed her initial tests with flying colors. She did spend a day in the nursery being treated for transient tachypnea of the newborn (TTN) which is “wet lungs,” a common issue with premature babies as their lungs aren’t fully developed. She was also monitored for a small pneumothorax, an air pocket between her lung and the chest wall. Neither of which were a result of her IUGR.
The final verdict—It was a combo of #3 and #4. Our placenta was sent away for testing after my c-section. Our doctor immediatly noted that it was smaller in size and although nothing on the testing came back conclusive, it defintiely was nurtrient-deficient. Also our baby was constitutionally small. Both LeBraun and I are smaller, slimmer people.
We are over the moon grateful for this diagnosis, but we were definitely put through the ringer and spend months on an anxiety rollercoaster in addition to being pregnant during a worldwide pandemic. Definitely not how we envisioned our first pregnancy but none of this matter now that we are holding our beautiful baby girl!
UPDATE: 5 MONTHS LATER
How is Aurelia doing?
Gosh, she is our light! Since she was nutrient-deficient in the womb, she has been thriving on the outside. She regained her initial newborn loss before we were discharged from the hospital. Our pediatrician monitored her weekly for the first 1.5 months and each visit she showed she was gaining weight and filling out more. She was born in the 2nd percentile for weight and at her 4 month checkup was placed in the 30th percentile for weight! Her next checkup is 6 months.
What's Adjusted Age?
So she has been on the outside now for 5 months; however, when babies are born before their due date we use their "adjusted age" to track developmental milestones. To calculate you take 40 weeks and subtract the number of weeks/days she was born early, which for her is 3 weeks.
So yes she is 5 months old but developmentally is closer to a 4 month + 1 week old. The adjusted age is really only used until she is 2 years old.
We didn't realize this was even a thing at first and were wondering why she wasn't smiling or rolling like other babies her age. Our nurse explained adjusted age to us but also gave us the following advice: Children are like a bag of popcorn. All will pop in time. Some pop early. Some pop later. Be patient. They will pop when they are ready.
Has she had any difficulties or issues that have stemmed from her IUGR diagnosis?
At the beginning she was choking on her milk a lot and we were told it was because her mouth and throat muscles weren't as developed yet - which makes sense as she was born early - but we find that she still chokes quite a bit when being fed/nursed and now that she is teething, on her spit. I feel like if it was a preemie thing that it shoudl have sorted it out by now but doctors don't seemed to be concerned so shrug.
Her pneumothorax cleared itself up as did her "wet lungs."
I guess the only thing of note is that she is physically smaller than her at-term counterparts. But that could also be that she was constitutionally small. We met another baby girl that shared Aurelia's original due date and was born one day after it. She weighed 7 lbs 5 oz when she was born and is now about 18 pounds at 5 months. Aurelia weighed 5 lbs 4 oz when she was born three weeks early and now is about 14.5 pounds at 5 months. However the parents are larger than LeBraun and I so again, shrug. It could be several factors. I'll keep y'all updated if anythign new develops.
