Nothing Else to Lose

Me, just one week before Lily's arrival.

Prenatal Diagnosis of Fetal Stroke

The next step in our journey involved a trip to Wilmington, North Carolina to see a specialist where we would get a more detailed sonogram and blood testing.  I had a bad feeling about this place from the moment I stepped in the door. First, they do not allow children in their office AT ALL. Then, there was soft, soothing music being played in the waiting room which was dimly lit and smelled of lavender and disinfectant. The two women already in the waiting room were obviously pregnant with multiples. I have never seen such huge baby bumps! Once you are called back, you get your own private nurse and your own private waiting room. And every room was equipped with a box of tissues as if crying fits would ensue at any moment. It was just creepy.

After seeing the sonogram technician we were whisked into our waiting room. And we could hear NOTHING! No footsteps down the hall, no quiet chatting in the next room, no flushing toilet, no overly soothing music, nada. It was unsettling because we were anxious to hear about Lily Pad. 

Finally, our nurse took us to a conference room in the very rear of the building. This should have given us a clue as to what we were about to hear, but it never registered with us until months later.  We were joined by a Genetics Counselor and Obstetrician, both whom we barely knew, and one of those boxes of sandpaper Kleenexes was unceremoniously placed in front of us. Another clue unregistered. What came out of their mouths next would haunt us for months to come.

They told us that Lily had several bleeds, strokes, in her brain and the sonogram revealed her brain ventricles were filled with blood. They did not know why this had happened or how to help her.  In addition, to the bleeding, Lily was also missing part of her brain, she had a cleft palate, and had a heart malformation.  It was theorized she had Dandy Walker Syndrome. In short, Lily would not live. On the slim chance she did live, she would probably be a vegetable. They suggested we have an abortion. Unfortunately, this would not be the last time abortion would be recommended to us. The doctors told us they could send us to another specialist to see if they could help us, but the Wilmington doctors could offer us no other assistance. They recommended The Children's Hospital of Philadelphia, Houston Children's Hospital, and Duke University.

My husband and I literally felt we had been hit by a Mack truck. I absolutely could not believe what I was hearing. This is the kind of thing you watch on Discovery Health or some other medical show.  Things like this did not happen to our family! What emotions were we experiencing at the time? Anger, frustration, disbelief, grief, sorrow, fear, desperation, depression, hopelessness.

Abortion: when faced with this option it actually seemed a feasible possibility given Lily's prognosis. Perhaps the greatest test of my Christianity came at this moment. Would God want me to carry a child to term only to watch it die anyway? Would God want Lily to suffer? Would God want me to suffer? Surely the Lord would condone such a heinous act as abortion when unavoidable suffering was involved? It seemed like the "right" thing to do and I was tempted.

Sweet Lily Pad is just a few weeks old.

But God loves us from the womb. We are fearfully and wonderfully made. And life begins the moment sperm and egg are joined. I knew this, have always known it and so I said no to abortion. Whatever suffering was ahead of our family, I had to let go and trust that it was indeed part of God's plan for Lily.

So, we asked to be referred to Duke University to see if their doctors could help us. But before leaving they sent us home with literature about the abortion option and a book to read to Lorelei and Lucas in the event Lily died. This was a completely sobering moment and it nauseated us to the core. We were then whisked out the back door of the medical office for fear our tears would upset those in the front waiting room. This is the only time I have ever been asked to leave by the back door of a doctor's office.

Bo and I said nothing the entire hour trip back to Jacksonville. Our friends and neighbors were waiting for us when we got home and we broke the news to them. They prayed for us and for Lily. After the prayer, Bo and I threw away the literature given to us by the doctors because we did not want to focus on man's prognosis for Lily, but God's. Even though it seemed absolutely hopeless, we held on to our faith and God's promises to give us a hope and a future. After all, we had nothing else to lose...

Divine Appointment

"The first time I saw your face..."

It started as Hydrocephalus

In the "Our Story" section of the blog, I sort of glazed over a lot of details about our prenatal visits and I would like to give an account of our experiences mainly because so many parents get such dire prognoses that it is hard to find hope in the middle of such bad news.  Many doctors have poor bedside manners and others take the time to explain difficult medical technology.  I just want others who are going through this to know they are not alone in their experiences so, I will be chronicling a few of the appointments and experiences.

It is by divine appointment that we found out about Lily's condition. I went to the doctor for a normal check-up at around 28 weeks of pregnancy and as I waited to see the doctor my friend (who is also the sonogram technician at my doctor's office) stopped in the waiting room to see how I was doing.  She asked if I had had my 3D sonogram yet and I told her no, that I thought it would be scheduled for much later on in the pregnancy.  She then checked her appointment calendar and discovered that she could do the 3D right then! So, I called my husband and he rushed over to the doctor's office with our two other children. 

Sweetest baby feet!

We all crowded around the monitor as my friend scanned pictures of Lily and pointed out her features.  We watched her suck her thumb and grab her feet.  Lorelei and Lucas were extremely excited to see their baby sister!  I did notice that during scans of the head that my friend took sometime to measure dark spots in the head area, but she never let on that anything was out of the ordinary.  In talking to her later, she said she saw the enlarged ventricles, but tried her absolute best not to become alarmed or attempt to scare us.  She was holding out hope that what she saw and measured was a mistake.  What incredible courage she had to treat the situation with dignity and professionalism!  She calmly printed pictures of the concerning areas and escorted us to the exam room so we could meet with the doctor.  The whole time she remained positive and did not cry, although she later expressed her desire to come into the room with us and hold my hand. 

In the exam room, our doctor explained that something concerning showed up on the scans and that he felt we should go see a specialist to get more information on the images.  He readily admitted that he did not have enough knowledge about enlarged ventricles to make a diagnosis, prognosis, and treatment plan.  He encouraged us not to worry and that we would find more answers at the specialist's office. 

Both of these medical professionals explained the situation with courtesy and concern, making sure not to worry us.  I felt they truly cared about our situation and encouraged us to call them if we had anymore questions.  My friend told me everything would be fine and that worrying would not be good for me or the baby.  She said many times poor image quality was often to blame for misdiagnosis. They both said they would be praying for good news and a continued healthy pregnancy. 

What is even more amazing to me about the whole experience is the divine intervention of it all.   If not for His intervention,  we might never have known anything was wrong and been unable to help her and prepare for her arrival.  Lily certainly would have had cerebral palsy if she had been delivered vaginally and if she had not been taken to the NICU shortly after birth she might have died. The Lord purposefully placed me in that doctor's office on the day my friend was working.  He skillfully arranged for her to conveniently walk past the waiting room, notice me, and sit down for a short conversation.  He slyly cleared her normally packed schedule to allow for the sonogram.  And He predestined my husband to be home from work on that very day.  The Lord had this planned for my life and knew what my husband and I would need to accept his will - a good friend and an excellent physician with Christ-centered, compassionate hearts.  What others see as coincidence, we see as divine appointment.