More Testing

Since we first found out that our baby would have special needs, we were given an appointment at a Maternal Fetal Health Clinic at the Royal Alex Hospital, for the very next Tuesday. At this appointment we had 3 tests done, another ultrasound, an amniocentesis, and an MRI. We will get results from the amnio and the MRI this Friday and next week. We were able to find out from the ultrasound though, that there is a cerebellum, it's just not a normal shape, and it's displaced.

The perinatologist that we saw suggested that this is indicative of Spina Bifida, and mentioned that she could see a fuzzy patch on the spine, very low. Spina Bifida is a serious condition, but the lower the affected area on the spine, the better. She said that it's low enough that it wouldn't impede mobility. However, coming from a place where we were expecting things like Anencephaly, or severe Cerebral Palsy, this was actually good news.

She also mentioned though, that 5-10% of babies with Spina Bifida, also have Down's syndrome. She did also say this would be like lightning striking twice, and is rare.

Another thing they found on the ultrasound was that the baby probably has a cleft palate, which can be a marker for Trisomy 18 (and Trisomy 13 I found out later). These are very serious chromosomal defects, and not compatible with life outside of the womb. These conditions, and Down's Syndrome (Trisomy 21), are not detectable on an ultrasound or an MRI, only an amniocentesis can detect these.

We felt that because we already knew that our baby was going to have special needs, we also wanted to know ahead of time if our baby was going to pass away shortly after birth. So we went ahead with an amniocentesis. The procedure does carry a risk of miscarriage, or pre-term labor if mom is further along like I am, (and it hurts I might add!), but we felt that God had upheld this baby this far, and we're confident that he won't let a test take our baby out of his will.

After the amnio was finished, our doctor counselled us for quite awhile about the markers and reasons she suspects Spina Bifida, and we also asked a lot of questions about this and what else it could be. We felt very supported, very understood and very cared for. This was such a relief, because in the past, I have experienced terrible health care practices regarding pregnancy complications, and we've had a few extremely frustrating experiences with health care related to Allison also. So a recurrence of that was actually something we prayed against. So a big praise the Lord went out for that one!

She also offered us the opportunity to terminate our pregnancy, which we immediately turned down. She then asked very specific questions about different situations in which we may be asked to reconsider our decision, such as if our baby had Trisomy 13 or 18 and if I became very ill and needed to not be pregnant anymore for my own survival. I still said no, and the doctor said "you have a little one at home though to think about". That's when I broke down and cried. I've never thought of that situation before, so I thought I knew how I felt about termination. It's always been an adamant "NO, NEVER" answer with us. But the reality of the situation really sunk in at that moment, that if our baby had a condition that wouldn't allow him or her to live after it's born, that I might have to let him or her die earlier to save myself.

This whole situation is something we never could have ever imagined, and even if we did, it's so different going through it personally than thinking of the "what ifs" before hand. I will never ever take health for granted ever again. That includes physical, mental and emotional health.