Some of my first thoughts after the shock of our potential (and then confirmed) diagnosis wore off, were about the medical problems that could be present because of Down syndrome. Like I’ve said before, I was very uneducated on this topic, but I headed straight for my old friend, Google! That was my first mistake, friends. Here are a few of the things you might come across if you did your own quick search:
-congenital heart defects
-gastrointestinal complications
-immune disorders
-sleep apnea
-increased risk of leukemia
-hearing and vision problems
-low muscle tone (leading to issues feeding and reaching milestones at "typical" speeds)
I started reading and researching anything I could, asking doctors questions, and of course pouring all of these fears out onto my husband. When you find out you're having a baby, these are not the first things that run through your mind. I found it so hard to accept that something could be "wrong" with my baby, that she may not be okay. I certainly wasn't okay at this point. I would receive reassurance from a doctor, and still think to myself, "but, what if?" What if they're wrong? What if this does happen to our child? What if I'm not strong enough to handle this? What if, what if, what if... I was worn out, and I know Wes was worn out from hearing this so often.
I say all of this to say that yes, there are some pretty scary things that can happen in children with Down syndrome, but they are not guarantees, and many are born quite healthy! And, even if my child had typical chromosomes, how could I guarantee there would be no medical problems? I couldn't. That's comforting.
Before any of this, I desired way too much to be in control. I did not like change, I did not want any major life surprises, I wanted to be assured of what was going on. Now, I can honestly say that I take great comfort in knowing none of this is up to me. There isn't a single thing I could've done to change how our story has been written so far, and there isn't a single thing I will do to determine the course of our future story. I'm obviously not perfect, and still can be a worrier, but every time I hear that familiar phrase of "what if?" creeping back into my mind, I remind myself who is in control, and thank Him for caring enough about me to determine my steps.
I just wanted to share with you all what we know medically about Emersyn so far.
At 19 weeks we had a level 2 ultrasound with a Maternal Fetal Medicine doctor. This was the same appointment we had the amnio performed at. The purpose of this ultrasound was to look at all of her organs, check her growth, and look for any markers that could indicate the possible Down syndrome diagnosis. Praise God, we got a very good report at this appointment. All of Emmy’s organs looked perfect, there was a normal amount of fluid, and while her growth was on the low end of normal, it was in the normal range. The only thing that was noted was that she had an echogenic intracardiac focus (EIF) on her heart. This shows up as a bright spot on the heart, and in simple terms is a small calcium deposit in the muscle of the heart. An EIF can be a soft marker for a chromosomal abnormality, but can also be present in typical pregnancies. The good news for us was that either way, EIFs alone have no impact on the heart’s function. Talk about a relief!
After our amnio came back positive for Down syndrome, we proceeded with an appointment to have a fetal echocardiogram performed. We had this done at 24 weeks. This is standard in babies with a prenatal diagnosis of T21. In our case it was mostly to rule out any further problems since our ultrasound had not revealed any major heart defects. The pediatric cardiologist took a very thorough look at our girl’s heart and with confidence informed us that he could find nothing wrong! He did tell us they will examine her heart again after birth, of course, but that even if a problem did arise, he felt sure that it would be very minor. We know there is no way to know for sure what will happen after birth with her heart or anything else, nor a way to know what the rest of her life holds, but what a relief that report was! So many of you that had been following our journey at that point, prayed with us for a healthy heart, and rejoiced with us. Thank you, all!
We have been watched pretty closely with ultrasounds since then, and no problems have been found! Doctors continue to monitor her growth, as she is measuring a bit behind her gestational age. Babies with Down syndrome will typically measure a bit behind, especially their long bone measurements, so this is no surprise and not a concern. We just want to make sure she does keep growing at her own pace and is getting what she needs in there!
As always, we can't wait to meet Emersyn Ann!
-Morgan
-congenital heart defects
-gastrointestinal complications
-immune disorders
-sleep apnea
-increased risk of leukemia
-hearing and vision problems
-low muscle tone (leading to issues feeding and reaching milestones at "typical" speeds)
I started reading and researching anything I could, asking doctors questions, and of course pouring all of these fears out onto my husband. When you find out you're having a baby, these are not the first things that run through your mind. I found it so hard to accept that something could be "wrong" with my baby, that she may not be okay. I certainly wasn't okay at this point. I would receive reassurance from a doctor, and still think to myself, "but, what if?" What if they're wrong? What if this does happen to our child? What if I'm not strong enough to handle this? What if, what if, what if... I was worn out, and I know Wes was worn out from hearing this so often.
I say all of this to say that yes, there are some pretty scary things that can happen in children with Down syndrome, but they are not guarantees, and many are born quite healthy! And, even if my child had typical chromosomes, how could I guarantee there would be no medical problems? I couldn't. That's comforting.
Before any of this, I desired way too much to be in control. I did not like change, I did not want any major life surprises, I wanted to be assured of what was going on. Now, I can honestly say that I take great comfort in knowing none of this is up to me. There isn't a single thing I could've done to change how our story has been written so far, and there isn't a single thing I will do to determine the course of our future story. I'm obviously not perfect, and still can be a worrier, but every time I hear that familiar phrase of "what if?" creeping back into my mind, I remind myself who is in control, and thank Him for caring enough about me to determine my steps.
I just wanted to share with you all what we know medically about Emersyn so far.
At 19 weeks we had a level 2 ultrasound with a Maternal Fetal Medicine doctor. This was the same appointment we had the amnio performed at. The purpose of this ultrasound was to look at all of her organs, check her growth, and look for any markers that could indicate the possible Down syndrome diagnosis. Praise God, we got a very good report at this appointment. All of Emmy’s organs looked perfect, there was a normal amount of fluid, and while her growth was on the low end of normal, it was in the normal range. The only thing that was noted was that she had an echogenic intracardiac focus (EIF) on her heart. This shows up as a bright spot on the heart, and in simple terms is a small calcium deposit in the muscle of the heart. An EIF can be a soft marker for a chromosomal abnormality, but can also be present in typical pregnancies. The good news for us was that either way, EIFs alone have no impact on the heart’s function. Talk about a relief!
After our amnio came back positive for Down syndrome, we proceeded with an appointment to have a fetal echocardiogram performed. We had this done at 24 weeks. This is standard in babies with a prenatal diagnosis of T21. In our case it was mostly to rule out any further problems since our ultrasound had not revealed any major heart defects. The pediatric cardiologist took a very thorough look at our girl’s heart and with confidence informed us that he could find nothing wrong! He did tell us they will examine her heart again after birth, of course, but that even if a problem did arise, he felt sure that it would be very minor. We know there is no way to know for sure what will happen after birth with her heart or anything else, nor a way to know what the rest of her life holds, but what a relief that report was! So many of you that had been following our journey at that point, prayed with us for a healthy heart, and rejoiced with us. Thank you, all!
We have been watched pretty closely with ultrasounds since then, and no problems have been found! Doctors continue to monitor her growth, as she is measuring a bit behind her gestational age. Babies with Down syndrome will typically measure a bit behind, especially their long bone measurements, so this is no surprise and not a concern. We just want to make sure she does keep growing at her own pace and is getting what she needs in there!
As always, we can't wait to meet Emersyn Ann!
-Morgan
We can’t wait to welcome Emmy into the “hood” Morgan. Lifting you guys up in prayer and sending hugs your way. Please let us know if we can ever serve your family in any way! Emmy will be a blessing to all of us ❤️
ReplyDelete