Celine is our second child. When I became pregnant with her, her brother was only 5 months old. This caused me a bit of stress, since I was still adjusting to a new baby, and the idea of another one was overwhelming. Maybe because I was preoccupied with my own feelings instead of this new little one on the way, I was not really enthusiastic about the ob visits, the ultrasounds, shopping for baby things, etc. All of this changed at our 22 wk ultrasound session. Suddenly, the baby became the center of my universe.

At that appointment, we learned that our baby had serious structural problems with her heart. The ob told us that the sonographer couldn't find half of our baby's heart. She said the condition she thought our baby had, HLHS (hypo-plastic left heart syndrome), was "incompatible with life". I asked about fetal surgery (I later learned that an experimental procedure had been successfully performed around the same time on baby "Jack") and she shook her head. I asked if the baby was going to be okay for the rest of the pregnancy. I remember feeling simply helpless. The ob told us that we needed to have a level II ultrasound - but not to expect the diagnosis to change, since the high-risk ob used the same sonographer her office used. Well, so much for holding out any hope . . .

The high-risk ob/perinatologist confirmed the diagnosis in the darkness of the tiny ultrasound room. We were offered termination, comfort care until the baby died after birth, or we could consult with a fetal cardiologist to have our baby's heart assessed for the possibility of surgeries and/or transplant. He told us that we really needed to make a decision very soon, because there was little time left to arrange for a termination. Well, we weren't going to terminate and thankfully, the perinatalogist promised us that he would not bring it up again. We scheduled for the appointment with the cardiologist.

Our first meeting was by remote closed circuit television assistance. A sonographer on our end guided the probe for the cardiologist who viewed the results on a screen at her location. I tried to watch her facial expressions while she watched the flashes of red and blue swirling over the image of our baby's heart. The color swirls and swish sounds coming from my belly were abbreviated by several time-outs because I began to sob inconsolably. I apologized each time, and the attending nurse told me that she would be worried if I hadn't had this reaction.

When we finally met our fetal cardiologist in person soon after, we immediately sensed that she had a very positive approach. She spoke and behaved as though she wanted our baby to live. We believed that she would find a way to help us. We had hope again. She gave our baby a new diagnosis, HRHS (hypo-plastic right heart syndrome). We were suddenly introduced to the world of chambers and valves and spontaneously produced pencil sketches of our baby's abnormal heart. The doctor juxtaposed her drawing of our baby's heart with a normal heart, pointing out the severity of the defects. The syndrome, in our case, was a collection of seven serious heart defects; hypo-plastic right ventricle, coarctation of the aorta, Ebstein's anomaly, L-Transposition of the Great Arteries, and 3 holes, both asd and vsd. To quote the words of a senior pediatric cardiologist, our baby had a "seriously screwed up heart!"

Well, even so, the diagnosis was easier to take this time around because we had a plan to pursue. Soon after birth, our baby would have the first of three open heart surgeries that would allow her heart to function with only one working ventricle. The first of these surgeries, the Norwood, we learned is the most dangerous and complex. Still, when babies survive this first surgical "remodeling", the survival rate goes up significantly. The second and third surgeries, the Glenn and Fontan were in our periphery, of course, but we couldn't allow ourselves to think past getting our baby through the Norwood just yet. We had a game plan, we had a wonderful team, we had hope, and we had faith in God. Now we simply had to wait for our little miracle to come on the scene

She arrived October 2, 2001, three weeks early. Because she was born on the feast day of the Guardian Angels, we added the name "Angelica" to the name we had chosen long ago, Celine Marie. She was a big girl at just over 8lbs and she was precious. Her cry was strong -- surprisingly strong. On the outside she looked like a beautiful, healthy, normal baby girl. I was allowed to hold her only for a few moments. I tried to peek beyond the shoulders of the NICU team hovering over my newborn baby. They wheeled her away and my heart was broken. Even though I had hope, there was no denying that now it had begun, and there was certainly a chance of losing her.

In her NICU bassinet she was carefully monitored. At first she seemed out of place because her "roomates" were tiny triplets and preemie babies -- and she really was a big girl. But by the first evening the signs of her heart disease were showing . . .she was gradually turning blue, or "cyanotic". The senior cardiologist knocked on the door of my hospital room, trailed by several residents. I saw him pull out the scratch pad and pencil to have a go at the oh-so-familiar heart diagrams. Our baby needed a heart catheterization to keep her PDA from closing. In a baby with a healthy heart, the PDA should close, but in our Celine's case, it needed to stay open to keep the blue and red blood mixed. He told me that if they didn't do the cath right away, he had no doubt that she would not live through the rest of the week. Hot , heavy tears streamed down my face and plopped onto the scratch pad heart he had drawn. Even though this procedure was not particularly dangerous, it was so painful to hear that she was close to death.

At five days old we were told that Celine needed to have her Norwood operation right away. I had already been dismissed from the hospital and Celine had to be transported by ambulance to another hospital far across the city. I was so scared that something would happen during that ambulance trip, but she arrived safely and stable. We soon joined her and were told that, in fact, she would have her surgery the very next morning. There was little time to agonize, but just enough time to round up as many prayers as we could -- and we did just that. Celine's surgery went very well and though it took three weeks, she recovered wonderfully. She was able to come home on her due date, October 20th, without a feeding tube or oxygen! We had a lot to learn about caring for a "heart baby" -- but all in all, it was not very difficult. There were feeding issues early on, and we had to rent an oxymeter to occasionally moniter her oxygen saturation levels. All of this I learned how to do quickly. In fact, even though our insurance provided home nursing, I cancelled it, because there was nothing that the nurses did that I couldn't do, and I have no formal medical training whatsoever.

I know that some parents facing a diagnosis that will involve heart surgery have expressed concern, or perhaps have been told that the open heart surgeries are terribly painful. Of course, without pain medication and sedation during recovery, the aftermath of such a surgery would be quite painful. Fortunately, our surgical team was very conscientious about Celine's pain tolerance and during recovery for both surgeries, she was not in pain. There are no nerves in the chest bones, but the muscles that are pushed back are prone to soreness for a little while after surgery. Celine has never been dismissed from the hospital with any pain medications because by the time she came home, she had healed and rested sufficiently. I have been thankful that there has not been any significant pain involved in my daughter's surgical interventions. Still, even had there been pain involved, I believe that some temporary discomfort is well worth saving her life.

We are now post-Glenn and Celine recently turned 1 yr old! She takes two medications twice a day -- which are not in the least difficult to administer. Like some heart babies, she is a bit behind in her verbal/receptive communication milestones. To remedy this, we have a speech therapy session once a week. We see the cardiologist every few months now, instead of every three weeks and her pediatrician is learning to relax a bit with her and treat her, for the most part, like any other baby.

We haven't yet arrived at the end of our journey. Celine will have another surgery in about a year or whenever she reaches 22 lbs. Sure, she is behind in one area developmentally, but all the same, we are so proud of and pleased with our little girl. Looking backward to the time of our diagnosis, it was such a painful time. We did not know what the future held -- and of course, we still don't! But, we are able to give our baby all that she needs to be happy, a family who loves her. And, in case you were wondering, yes . . . she is still the center of my universe (as is my 2 year old son) -- and I wouldn't have it any other way! She reigns, most securely, as "queen" of our hearts.

2003 Update

In April, Celine had her third surgery, the Fontan. Things were a little harder on us this time around, especially Celine, because she was a bit older and more aware of what was happening. Thankfully, there were no complications from the surgery whatsoever and we were in and out of the hospital in one week's time. In the several months since her Fontan surgery, Celine has gained a few pounds, grown taller, and some teeth that were taking their time to come in have since come in. She is developing right on track for a 2yr old, although her weight is still very low compared to the average 2 yr old. All the concerns we had so many months ago about her speech development seem now to be so unfounded. She has a truly impressive vocabulary now!


In June, Celine became a big sister to Genevieve. Having a "baby" to focus on has helped our family to move beyond Celine's heart defects. She continues to be a happy and, for the most part, healthy little girl. We feel very blessed that things have turned out so well and hope and pray that Celine will stay healthy and happy well into the future.



2005 Update coming soon!