Logan’s 20 week anatomy scan- Trisomy 13 and his prognosis
On January 7th we had Logan’s anatomy scan. We were apprehensive to go based on past experiences with Maternal Fetal Medicine (MFM). Stephen and I were joined by my dad (David) at this appointment since he has never been to an ultrasound.
When we arrived we were told that there was a critical patient and our appointments would be pushed back at least an hour. Not a big deal because we would want the same treatment if we needed it. But! Waiting that extra time made us a little more anxious.
During our wait, the supervisor (Penny) came out to talk to us. My regular OB had made a phone call expressing our concerns regarding the last couple of appointments. Penny talked with us for about 15 minutes. It was nice to have her hear our story and understand why the last few appointments were difficult. From that point on it felt like everything had changed. I’m glad that it did but wish it had been like that from the start!
The ultrasound
We were brought to our ultrasound room by the tech, Aaron. He did the anatomy scan which lasted about 45 minutes. After, the doctor (Dr. Drennan) came in to review what she had seen on the scan. The swelling/ edema around Logan’s head, neck and abdominal region has continued to get worse. She said there was a possibility of that eventually subsiding, but like we’ve heard before, every baby is different. We especially want the swelling around his neck to go away because it won’t be easy for him to breathe when he’s born. They were hoping to see his face more clearly this ultrasound, but because of the swelling had a hard time seeing much. Dr. Drennan still believes he will have a bilateral cleft lip and palate.
The “good” news
As far as his kidneys are concerned, we were told that it was a gray area. She believes that we may have caught Logan’s bladder empty at both scans. The amniotic fluid level would be much lower if his kidneys weren’t working correctly. For Logan, there seems to be a normal amount of amniotic fluid at this point. Yay!!!!! We pray this is the case!
The bad news
Our little Logan has some heart defects though. Our Doctor explained to us that Logan has TGA.
—> Transposition of the great arteries (TGA) is a heart condition that is present at birth, and often is called a congenital heart defect. TGA occurs when the two main arteries going out of the heart—the pulmonary artery and the aorta—are switched in position, or “transposed”.
Scary, right?! There is something amazing about this though… because he has a VSD along with the TGA, Logan is in a better position.
Because the main arteries are switched, there are two separate blood circulations instead of a single connected one. Thus, blood with oxygen from the lungs does not get to the rest of the body. This means that TGA is a cyanotic (lacking oxygen) heart defect that leads to a bluish-purple coloring of the skin and shortness of breath. How bad the symptoms are depends on whether there is a way for the two separate blood circuits to mix, allowing some oxygen-rich blood to get out to the body. This mixing can occur through other defects, such as a hole between the bottom chambers of the heart (a ventricular septal defect)
http://www.cdc.gov/ncbddd/heartdefects/tga.html?mobile=nocontent
We have an appointment set up with the cardiologist in early February. The cardiologist will be able to look into what drugs to give Logan when he is born. Normally they would discuss surgery, but in the end we were told the trisomy in itself will kill him and he probably wouldn’t make it through surgery. They said they aren’t sure any surgery is recommended.
The plan
We then had our third appointment of the day. This one was with the grief counselor, and Dr. Drennan sat in with us. They asked us if we had any more questions about the anatomy scan, and we discussed those for a bit. I always have questions! I asked if it’s best for me to go full term. Their response was that 38 weeks is ideal, but they won’t let me go to 40 weeks, and not before 30. There are three reasons to be induced earlier… 1) if my blood pressure gets too high from pre-eclampsia 2) Logan’s swelling becomes too great… which may cause a natural birth to be complicated. They don’t want to do a c-section because that will not help Logan’s outcome. 3) If his heart stops beating before he is born 😦
Planning for the future and what to expect
Then we went into figuring out Logan’s “comfort” birthing plan. They sent us home with a packet that outlines his birth and potentially his death. Everything from pain management/palliative care, monitoring, labor/ delivery, whether or not we want “heroic” measures, baptism and final arrangements. The packet is overwhelming. It hurts to look at but I know it’s better to prepare now when we are able to think clearly.
Talking about what happens when he passes is unimaginable. It’s hard to think about. We need to start contacting cemeteries to see what it will cost. The grief counselor (Carole) suggested not to go to the cemetery in Gig Harbor because they are extremely expensive. There are places that will discount funerals for babies though. Carole told us there are funeral homes that don’t feel right about charging full price for this sort of circumstance. I’m glad there are places out there like that!
All and all, I’m pleased with the way our appointments went. Dr. Drennan said that out of everything going on with Logan, nothing would be immediately life threatening to him (besides the trisomy). Based on what she saw, she thinks we may have up to 48 hours with Logan! I know there is no way to judge this or know for sure… but Jesus thank you for the positive Doctor that you have given us! We need this hope to keep going. We are so thankful that Dr. Drennan is now in charge of our care. It makes a huge difference to have an optimistic doctor instead of one that gives us no hope. ❤
Logan, kick some trisomy butt!!!! Mommy and Daddy love you.
Initially written January 10, 2015