Medical Update - 6/17/08

Today at 11am is our first meeting with the neuro-surgeon. This is the guy that will be in charge of Annabelle's care directly after the C-section.

We have a list of questions that we have been compiling and we are eager to meet with him to get more info.

Updates to follow . . .

UPDATE:

The other day, we received a copy of a letter from our perinatologist to the neurosurgeon (NS). The purpose of the letter was to give the NS a basic rundown of findings to date. In part, it listed initial findings of:

- Large thoracic level neural tube defect
- Abnormal intracranial anatomy, including lateral ventricles, cerebellum, choroid plexus and cisterna magna - positive lemon sign, positive banana sign, bilateral mild ventricular dilatation [1.2 cm] and bilateral clubbed feet

It then listed confirmed findings of:

- Neural tube defect (from approximately T5 / T6 to sacrum)
- Ventriculomegaly - 2.34 cm
- Bilateral clubbed feet

Then MRI findings of:

- Spinal dysraphism in mid to lower thoracic spine and extending to the sacrum
- Subtle caudal regression cannot be excluded
- Severe focal kyphotic deformity of the upper to mid lumbar spine
- A Chiari II change with hydrocephalus
- Distention of fetal urinary bladder and probable bilateral clubbed feet

Much of the terms and findings I was familiar with from my recent reading. The terms I was unfamiliar with, I Googled. The news was not good.

After doing a certain amount of research, I had to just stop myself and admit that 1) I am not a doctor so I only have a limited comprehension of what I am reading and 2) I need to just get some facts from the neurosurgeon.

The neurosurgeon came highly recommended from a number of sources and we were glad that he had agreed to see us "sooner rather than later".

He was kind, compassionate and professional. In fact, he has tended to just about every infant born with Spina Bifida in San Diego County for the last decade.

The short version is, he had only seen one case comparable in severity to Annabelle's - and the child only lived 4 hours outside the womb.

It became clear to me that the reason he was seeing us "sooner" was to again give us the opportunity to terminate the pregnancy. Although that has never been an option for us, I totally understand the doctor laying out all our options in light of this new information and it did not bother me one bit to cover that ground again.

When we made it clear that was not in the plan for us, he was very supportive and agreed to make himself available to us and to help us navigate this situation.

It's bad news - no way around that.

I have a great many thoughts and feelings about it all but I think it's all better left unsaid until after a nights "sleep" lest I start posting things that I, upon reflection, don't really think, feel or believe.

Please pray.

Our Annie needs a miracle - Keep the faith, baby - please don't give up on praying for us.

More to follow . . . .