I Had To Know

When I heard the term Trisomy 18, I immediately began researching.  I found a lot of information - sadly not much of it gave me hope for the quality of life for my sweet Willa.  To learn more, follow this link Trisomy 18 Facts.  I was desperate to get her home, and prayed she would be able to make it through NICU.  It wouldn't be for her.  Ultimately she got an infection that required a blood transfusion and an extensive anti-biotic treatment before we could even begin to address her individual issues with Edward's Syndrome.

Social media offered a look into the lives of other children with the condition who were still alive and struggling with issues.  Some common, some completely random.  I wanted to know exactly how that third 18th chromosome had affected her little body as outwardly there were no obvious markers that she was sick.  We had even been referred to Primary Children's for a fetal echo cardiogram and were given a clean bill of health.  The heart appeared (at 22 weeks) to be developing and functioning perfectly normal.  I felt confused at how she could appear to healthy physically and on ultrasound but be so sick that it would end her life just short of eight days, so  I requested her a copy of her medical records.  I discovered that she was dealing with a lot of issues inside that little 2 pound body,and now I am so thankful and admire her even more for her warrior spirit that fought this disease to give her family time.  Days.  Hours.  Memories.

Officially, she had:

Thrombocytopenia - a blood condition of very low platelets.  Normal count is 150,000.  She ranged from 70,000 to 102,000. It can cause easy bruising and bleeding that is hard to stop, including internal.  Immature platelet fraction was also found due to the thrombocytopenia.  She didn't have the ability to replenish her own blood supply.        

Congenital glaucoma  - eye disease that can lead to blindness. Normal eye pressures measures 10-12 and hers was 20-22.

Metabolic acidosis - too much acid in her bodily fluids making her kidneys not function properly. Also causing rapid breathing and lethargy. 

Heart murmur.  Apnea, leading to lack of oxygen, and possible brain damage.  She was unable to breath without tubes, and she never "normalized."

Surfectant deficiency disease - causing respiratory distress and ultimately failure.  

Pulmonary hypertension - high blood pressure in the pulmonary artery, linked to her heart issues.  

Patent forman ovale   which was a hole between the upper left and right atria of her heart along with a leaky heart valve and a coarctation (narrowing) of her aorta. All major problems that would have required surgery for repair and constant monitoring. 

Ventricular septal defect - another hole, but this time between the lower chambers of her heart causing it to work even harder to pump blood.  

A prominent cavum septum pellucidum that contained debris. A triangular shaped membrane that never fused and left a "cave" and linked to mental disorders.

A  fluid filled mega cisterna magna which is a large space at the back of the brain.

An fluid filled arachnoid cyst on her brain that would lead to developmental delays.

Premature sulcation (regarding the growth and developement of her brain).

Her body (with all it's issues) was perfectly and wonderfully made for her individual journey.  Of this I am sure. God has said so.