The Story That Must Be Told…

The following story was inserted with our daughter’s birth announcement and is what I like to call the Reader’s Digest version of our experience with a poor prenatal diagnosis. I am adding some additional thoughts/information at the end of “Angela’s Story” as I believe that any one reading this is in need of more details; more strength, more hope. With every piece of feedback I have received pertaining to our daughter; one statement is repeated: “This is a story that must be told”.

Another thing that I heard repeatedly is that our children choose their parents. I subscribe to this thought process as I believe that we all have a purpose and that our children often help us realize that purpose. I believe that one of the purposes of our daughter’s journey into our life was to truly help strengthen our faith. Through her, we are continuing to learn what direction our lives will now take. Everything in our lives up to this point brought us here. Now, it was time to do more than talk the talk.

Angela’s Story

On June 7, 2004, at 17.5 weeks pregnant, we learned through an ultrasound that our unborn child had a cystic hygroma accompanied with hydrops. This is a condition that occurs in approximately 1 in 12,000 pregnancies. A cystic hygroma is fluid that can occur in almost any location; the neck is the most common. Hydrops describes fluid on any other organ in the body. At the time of initial diagnosis, our child had fluid on the right lung, abdomen and swelling on the hands and feet. The baby’s fluid filled areas were obvious on the sonograms; even to the untrained eye of a parent. The mortality of a cystic hygroma diagnosed prior to 30 weeks of gestation and associated with hydrops is virtually 100% We were told that, statistically speaking; if the baby was able to survive the entire pregnancy; we would be faced with a still birth or a child who lives for a very short time. We were informed by two doctors at two different times that the pregnancy could still be terminated. I remember saying to Steve: “How could we ever do that when I’ve been feeling this baby move inside of me since 10 weeks!”

On the very day I returned from the ultra sound, our oldest daughter, Lily suddenly had a new playmate. An imaginary playmate whom she was calling Angela. We reviewed books, videos, new friends: we didn’t know one single person named Angela nor had we ever used the name in casual conversation. The following week when Steve accompanied me to another ultra sound; a counselor was explaining the condition to Steve for the first time. She said that when a person reviews the films of an ultra sound for a baby with this condition, many people refer to the fluid around the head area as a halo. Steve and I continued: Halo as in Angel as in Angela. We didn’t know if we were having a girl, as we don’t “peek”, but, we began to have a strong suspicion that we were going to be blessed with a girl and that her name had been chosen. It was signs like this (and there were many) that gave us the inner strength to believe and to face this journey with courage, faith and hope.

Our early research had shown us that many people in our circumstances prepay for a funeral and wait things out. Immediately, we decided that type of approach wasn’t an option for us. We would never discuss such a need; like every other person in this world, we could ask for a miracle and we needed to believe with all our hearts that when statistically speaking; there is no hope: there IS GOD. We decided that the pregnancy was its own journey and it was our job to make it joyful for all members of our family; especially our unborn child. We were going to celebrate the life inside of me and believe that the best outcome was a very real possibility. With each passing day our hope grew and I felt such a confidence and certainty about the survival of our child; that I couldn’t hide it. A physician friend reminded me that there’s a miracle in every day; just be on the look out for it, it‘s right there; waiting to be discovered. That became one of my mantras and we began to focus on the miracles that were all around us: love for each other, our three children, conception, support of family and church, the beauty in a sunset, the humor in our children; the list is endless. With an attitude of gratitude, we knew should the journey end as the statistics indicated; God would provide us with the strength and knowledge to handle the situation, we simply didn‘t need to worry about it.

After initially receiving this news, it was very difficult. We were full of fear, doubt and worry. But the other thing that happened after receiving the initial news was prayer. Lots of prayer from those who were much stronger than we were at that point. In the beginning, Steve and I were two frightened souls with shaky voices, praying; begging for a miracle. The prayers of two which were but a frightened whisper quickly became a loud chant by family members to a welcoming roar by a ‘team’ of many, many people we may never know directly. Prayers of family and those church communities within our family’s reach who began what we can only humbly describe as a movement. Those awesome prayers got louder, stronger and multiplied through the coming weeks and months as we grew strong enough to start asking for prayers and positive thoughts from family and friends. It was the ‘power of prayer’ that gave us the courage, strength and knowledge that contrary to the statistics; a positive outcome was inevitable. It became obvious to us what Angela’s middle name would be: Faith. After all, this was clearly a journey of our faith.

At 26 weeks, we learned at the next ultrasound that the fluid on the baby’s abdomen had disappeared. The ‘team’ was celebrating! In addition, I had surpassed the ‘viability’ concern for the state of Rhode Island (24 weeks). Now, our baby was considered differently by the medical community. It is important to note whether I was seeing a perinatologist, gynecologist, midwife, nurse or medical technician; they all had the same comments: the baby is SO active and has such a strong heartbeat. I beamed and nodded confidently every time. I knew.

I felt great throughout the summer and fall months and into labor and delivery. I spoke two thoughts to anyone with whom we had shared our situation: 1) this will be an easy delivery and 2) this baby will come here and will live. I knew then and know even more so now, how nervous that made many people. This, I surmised must be what the famous “Footsteps in the Sand” story is really about. I knew that people were praying and thinking positive thoughts for us constantly by the way I felt every day. I felt consistently upbeat and positive: surely, this was the power of prayer!

On October 25, I thought I might be having back labor. I had never experienced this before and had to call the doctor’s office. It was suggested that I go to my other doctor’s appointment at the hospital and then go check in. There were enough reasons to stay there, so I did. At approximately 11 p.m. that night; all indications told us that it was time to push. However, there was a sudden concern: the baby was breech. An emergency cesarean section ensued. Angela was immediately received by a team of Neonatologists who went to work on getting her to breathe the room air. Despite the grim statistics we had received in June; Angela Faith was here: born at 11:52 p.m. She had already surpassed the expectations of many, simply by going full term. Now she had arrived and the miracle of her life was continuing with full force.

I didn’t get to see my daughter until 4:30 a.m. She was hooked up to monitors for her heart, blood pressure,+ oxygen levels; there was a respirator, lines for pain medication and eventually, nutrition. Before the next 24 hours had lapsed, she would have two tubes going into each lung as they both had collapsed. Her tiny hands were pinned down so as not to compromise the lines and the respirator was a loud consistent pump, keeping her lungs inflated. In addition, her lungs created a temporary pulmonary hypertension (thank you God for such a strong heart) situation. My first glimpse of our daughter would have upset most. However, I never experienced one second of fear, doubt or worry. I felt so positive and upbeat that our little girl was alive and I knew that this was all temporary; I KNEW she was here to stay. Remember, this was our best case scenario! She was right where she needed to be. From the beginning, she was considered a critical care case. The doctors had no explanation as to why her lungs were collapsing. I told them that I wasn’t concerned; after all, the hospital is a teaching hospital and she would be a teacher to these healers in her own way. I knew without a doubt that she would be ‘prayed’ all the way home at exactly the right time. With all of their education and experience; I was delighted to hear them use such a sophisticated word when describing our daughter: “Feisty!” “She’s very feisty!” I heard this again and again. Funny, I already knew that.

It would be 14 days before we could hold our daughter. There were some days early on when she was in such distress that we couldn’t even touch her. The day after she was born, Steve returned to the hospital with pictures of our three other children. He decorated Angela’s area with her siblings. It was one of the most touching things to look at. This little girl would be welcomed home by quite a bunch.

Angela entered the Neonatal Intensive Care Unit on October 25 and left on November 26. The last week of her stay, I was approached by a few doctors and nurses who hadn’t worked with Angela but were aware of her case. I heard the same thing repeatedly: “She has made such incredible progress.” “I can’t believe how quickly she has turned around.” I could. I just knew how powerful prayer can be.

When we look at Angela who is now 19.5 inches long and 7lbs 6 oz; we are reminded how important it is to look for the miracle in every day. It’s there for all of us; we just need to be on the lookout. Because of Angela, I have met some of the most spiritual and amazing people I have ever met in my life. Daily, Steve and I received so much from so many: positive verses and phrases from the bible and other sources, Reiki, medallions, words of encouragement, food and prayer. So very much prayer. We have learned that it is the power of prayer and what is in our hearts that can make the impossible possible. Early on, so many thought that it was the end for Angela; yet it is with excitement and eternal gratitude that we look forward to what is truly The Beginning.

With love, Christine, Steve and Family
January 2005



Early on, I did what so many of us do today: searched the internet for something, ANYTHING to give me hope. Thank the Lord that I stumbled across BeNotAfraid. I downloaded Sue Colbert’s "I Love to Tell the Story" regarding her family’s experience with Cystic Hygroma. After my diagnosis, I often read it to remind myself how important it is to believe that the impossible is possible. Aside from this site; I made the decision not to search the internet for further information. I made the mistake of doing it two times after receiving the diagnosis and it was on those two occasions that I say I gave my energy and thoughts to the negativity of this world. I quickly determined that continuing to research and worry wasn’t going to work for me if I wanted to be focused and positive. I felt as though all of the information available was grim and very statistically oriented. I found comfort in the signs that God so often gave us. I did Reiki throughout my pregnancy myself and through a very skilled and spiritual Reiki teacher. Filling my head with positive and happy thoughts was a necessity for me, my family and our unborn child.

During the first 2 weeks of initial shock when we were trying to digest the diagnosis; we felt as though we could not be so selfish as to ask for a miracle. After all, we had three healthy children; surely there are so many without such a blessed life. Then, we decided that we could ask. Miracles are available for the asking. Every single person in this world is miracle-eligible. Maybe we would get the pretty package of a miracle that we had been a witness to three times before (with our other children) or maybe not. Either way; a miracle was in the making and we needed to be on the lookout for a miracle every day. It was then that we began to reach out to everyone that we knew who had a relationship with God; lost their relationship with God or never knew God and we asked for prayers and positive thoughts from all. It was all of that prayer and positivity that buoyed us through the journey. Towards the end of my pregnancy, Luke 18:1 played a big part of our positive thought process. It was presented to us by three different and independent sources at different times and the message for us was simple: Have faith. Be persistent. Keep asking God for what is in your heart. Keep asking. God takes care of everything. Always.

Early on, it was said to me that we all have good intuition; we just need to slow down and listen to that ’little voice’. Our intuition is God speaking; we should be listening. Once I slowed down, I saw how much God IS all around. I knew that intellectually, but my emotions needed to know and feel this. Once this happened; my fear, doubt and worry began to disappear. And yes, we are human beings in a world filled with negativity. Negative thoughts, worry and fears are constantly being tossed to us. For me, I adopted a new discipline: acknowledged the fear/doubt/worry that came randomly came into my mind and sent it on its way; out of my mind. Every religion that I am aware of speaks to the importance of positive thinking…what a difference it makes when all we put out are positives. Our egos are so quick to step in and tell us that we’re being foolish with our hopes and beliefs when a situation statistically looks so devastating. I often reminded myself and others of the Bible story of Noah. That poor guy was building a boat forever! People didn’t even know what rain was! He kept building and believing despite the fact that others must have thought him to be a complete fool. As I said to my husband; “What do we lose by hoping and believing like that of a child?” There’s no need to entertain the “What ifs”. We needed to deal with things as they came and it was so important to feel happiness with our unborn child and our life. I feel as though worry is the worst emotion that we have. It takes some courage to go against what others think, believe and fear. But, I believe that courage is simply worry that has said its prayers.

As of this writing; Angela is 4 months old. She is a little over 9 lbs and 21 inches. She is rolling from her belly to her back and she is extremely social. An x-ray in January revealed that one of her lungs was “over inflated”. My husband and I smiled when we surmised that the over inflation must be the result of all of the prayers that were specifically asking that her lungs be ‘blown up’…ahhh the power of prayer! The doctor isn’t overly concerned, but will monitor the situation. We have been given statistics as it pertains to Angela’s weight, height etc. I dutifully let people say what they must. Then, I file that information appropriately. After all, if we had listened to the statistics in the beginning, our littlest Angel wouldn’t be here. May God Bless You.

As a Catholic-based outreach, we are unable to recommend the use of reiki or similar practices. However, we are very impressed with this mother's exceptional commitment to her unborn baby and, indeed, her enthusiastic belief in the power of prayer, which we whole-heartedly endorse!

Are you looking for another story featuring a diagnosis of fetal hydrops? Kayla is a fetal hydrops survivor!