I decided to follow my gut instinct and go down to Children’s Hospital of Philadelphia (CHOP) to get a second opinion for baby Ella. We originally decided to go down to find out whether an Exit Procedure was necessary as a mode of delivery. An Exit Procedure is performed mostly in cases where the baby’s airway is obstructed. In our case, it is the micrognathia (severely small chin) that made Dr.s in NY think that the baby would have a hard time breathing on her own. It is similar to a C-section, however the mother is put completely out, an incision is made, and while the baby is still partially inside the uterus and connected to the umbilical cord they try to intibate or trach her. So if all goes well the baby is not without oxygen for even a second. However, the mother is given a specific anesthesia to keep her uterus big and relaxed - which in turn increases the chances of heavy bleeding. This is an uncommon procedure, with the risk of morbidity mostly to the mother due to possible hemorrhaging. CHOP has done over 80 of these surgeries, whereas hospitals in NY have only done a handful.
So the good news (at least for now) is that CHOP docs did not think that I needed an Exit. The sonograms and fetal MRI showed that the baby is swallowing amniotic fluid, indicating that she may be able to breathe on her own. They will have to reassess the need for an Exit if the amniotic fluid in my uterus starts to rise. In a few weeks, I will be relocating to Philly so they can monitor this situation more closely and so that if I go into labor early I will be close to the hospital.
The bad news is that this baby likely has one of three syndromes – all of which are extremely rare and serious. They mostly involve facial and limb defects. However, one of them, Fanconi Anemia, can be fatal as it is associated with blood and other types of cancers. Right now they think that her right thumb is underdeveloped and they don’t see a thumb on her left hand. Her ulnae are also way behind in growth and she has a few vertebral anomalies. They also are concerned about part of the back of her brain. They are not sure if the black on the scan is an indication of fluid or underdevelopment.
As you can imagine, Erik and I are shocked and devastated by this completely unexpected news. Our feelings are so volatile right now, one moment feeling proactive, the next angry, and the next sobbing. And while I know that this baby is still blessing and will serve a very special purpose in this world, I cannot help but feel pain for her already. I am her mother and it absolutely kills me to think that she will suffer or that we will lose her. We are trying to take it day by day and think positive, but this is hard to do when all we read or hear about these syndromes is terrible.
This is the most difficult thing I have ever had to endure in my life. I know that God has a plan in all of this, though I am not yet sure what it is. Perhaps it is to bring us closer to Him, to each other, or to show His love through this little spirit. I truly feel he is giving us this baby because he knows we will not forsake her. He knows that through all the trials and tribulations we will face we will continue to love and care for her, showering her with compassion and affection every step of the way.
So we thank you all from the bottom of our hearts for your continued love, support, encouragement, and most of all for your prayers. Erik and I are extremely grateful to have one another and to have such loving family members and friends. There is no way we could get through all of this on our own. While the road ahead of us will not be easy, I know in my heart we will get through this and that we will eventually smile and laugh again. No matter what illness plagues this baby, she is still ours and she is still a precious human being, a beautiful blessing sent to us by God. We already love her so much and will continue to love her unconditionally.