Janine using her walker

Expecting my 8th child, I was surprised and alarmed to experience cramping and heavy bleeding very early on, even before my first prenatal appointment. I had so desired this baby. With each new pregnancy my motherhood increased and the love in our family multiplied in ways I could never have foreseen as a young bride. The value of each life is such a sacred and incomprehensible thing, unfortunately missed by many in our society, and so many in the medical profession.

“You’re having a miscarriage”, I was told at the doctor’s office. I had quickly made an emergency appointment at the OB/GYN clinic closest to my home, never having been to this office before. I could wait for the tissue to pass naturally, or I could have a D&C. It would be quick and easy to just “clean things out”, but first they did an ultrasound. The technician called the doctor in to see it. Both were surprised to see a beating heart, given the presence of so much blood. “Do you want to terminate?”

WHAT?!! My reaction shut down further discussion of THAT option. I took my precious picture home, assured that it would only be a matter of hours or perhaps days. I was to come back in a week for another ultrasound, and to try and save any tissue that passed.

The next appointment was similar to the first, I fully expected them to tell me I had lost the baby, and they must have thought this as well, because of the dropped jaws in the ultrasound room. The baby had a strong, regular heartbeat and could be seen moving. Since I was still cramping and bleeding, I had to return again and again. After several weeks, which coincidentally extended from Ash Wednesday through Holy Week, my doctor said I must have had a subchorionic hematoma and hemorrhage, and that the baby may have been compromised – did I want to continue the pregnancy?

What?!! I must say that during these difficult weeks I spent much time in the Perpetual Adoration chapel, pouring out my heart and my tears. “Lord, I have no strength for this …” It was the first time in my life, I think, that I fully realized that God is truly in charge, and where He was leading me, I did not know, but I had to trust Him. Still, I actually felt so weak of will that I wondered if I would be able to withstand the pressure. Not on my own, but with God’s own strength. “Lord, You are my only strength …”

Easter brought so much joy, and the apparent end of my difficulties. Month by month the pregnancy progressed well and I was overjoyed at my 20-week level II ultrasound because everything looked good and … it was a girl! Having had five boys in a row, this was surprisingly welcome news as well. I went through the summer enjoying my blessed condition, keeping up my 3-mile walks, and feeling so well. No doubt because of all those friends and family keeping us in prayer! I looked forward to the October due date.

On September 21, my family and I attended the Saturday evening Mass. On the way home I started to feel a little strange. After a little while I started shaking. This wasn’t right – I’d never gone into labor like this before! My husband and I went to the hospital just to check things out, and I was admitted. They gave me something to help me sleep, planning a morning delivery. Somehow I just couldn’t sleep – couldn’t relax – and the nurses kept asking me what was wrong, what was I so anxious about (I was still shaking). I remember saying, “I don’t know – I have the feeling something is going to hit me like a ton of bricks …” I’m sure they’ve heard it all before from women in labor and here I was, just another nutty mom!

Toward dawn a doctor came in and agreed with the nurse that I could start pushing – I didn’t want to. I just turned my head to cough, and out popped the baby’s head. “Oh, she’s just a little peanut,” the doctor said as he delivered the rest of the baby. On my tummy, she did look so tiny and beautiful – like a little doll. Her 2-year old brother had been 9.5 lbs, and she looked to be half of that! Too quickly they whisked her away from me and as I gazed over to the warming bed where they were cleaning her up & checking her over, I heard a soft cry, like that of a tiny kitten.

I remembered vaguely from my nursing school days that this wasn’t a good sign. As the morning sun streamed into the room, the nurse said, “Oh, it’s a beautiful day to have a beautiful baby,” and I put the uncertain thoughts out of my mind. Little Janine Isabel was here and we started calling our family to share the great news. The nurses took her off to the nursery to do the weight and measurements. But they didn’t bring her back for several hours. They kept telling me to try to rest now, while I could. My husband went home to check on our other children.

Again, thinking back to my nursing experience, I remembered a day on my OB rotation when a baby with Down Syndrome was born. A group of us gathered around the baby in the nursery as our supervisor explained that the family had not yet been told, and that we were not to bring the baby to his mother until they knew if she would be “keeping” him. I think that there were still those protocols in place from the days when “imperfect” babies were immediately institutionalized because it was thought best for everyone.

As I was pondering these things, Janine was finally brought back to me. Strange questions were asked: Does she look like your other children? Don’t you think her eyes are a little widely spaced? Any birth defects in your family? Was this a normal pregnancy for you? Many different doctors came in and looked so carefully at her hands and her feet. No one would say what they were thinking. Nurses spent 20-30 minutes every 3-4 hours trying to help Janine “latch on” and nurse propertly over the next two days. She was able to do it once or twice, and se we were sent home on schedule, without further clarification.

Poor little Janine just couldn’t coordinate her suck and swallow, and consequently lost ground immediately. As she grew weaker, we tried a supplemental nursing system, a Haberman nipple, and finally a medicine cup and eye dropper, with the end result being that Janine was admitted to Children’s Hospital Intensive Care with “Failure to Thrive”. She was literally slipping away, but once a nasogastric tube was inserted and she was able to take in some calories, by tube feeding, she stabilized.

During this time we were given another diagnosis, over the phone: Cri-du-Chat (5p-), which is due to a missing portion of the distal end of the fifth chromosome. Not being given any further explanation, we looked it up on the Internet and were devastated by what turned out later to be outdated information: that 90% of these children die in infancy, most within the first few months. (Janine certainly would have died without the tube feeding!) But there were a multitude of other manifestations listed, including the cat-like cry, small head, mental impairment, poor muscle tone, abnormal larynx, heart defects, facial anomalies, inguinal hernia, orthopedic abnormalities, severe cognitive, speech, and motor delays, hyperactivity, stereotypic & self-injurious behavior, hypersensitivity to sound, possible vision and/or hearing problems. And, still, Janine could die suddenly at any time. Needless to say, this was more than overwhelming!

One often hears that God would never give a person more than he or she could handle – that we would not be tempted beyond our strength. In those first hours and days, I must say that I have never hurt so much in my life, and I sincerely hope that there is nothing worse than that pain of grief I felt. But God is good. In the midst of terrible suffering, He sent our family some very wonderful people who helped in every way, some who seemed to appear “out of the blue” at just the right moment. At a time when I could barely take care of myself, prayers were offered, meals were brought, my children were chauffeured, and I was accompanied to the NICU by another mom who understood, since she herself had been exactly where I was, 7 years earlier.

At the time, I could not even imagine being happy ever again, expecting Janine to expire while I was with her dreading the phone call when I wasn’t. (I startled whenever a phone rang.) Holding my hand, holding my baby, my “mentor” helped me to not be afraid and to have hope, no matter what happened, because God’s plan is infinitely better than anything I could come up with, in spite of the difficulties.

There were extraordinary events, too – like the cancellation of surgery to insert a feeding tube directly into Janine’s stomach. The night before, she had begun to consistently take in 50 cc of boosted calorie formula, adequate enough for the neonatologist to call off the g-tube.

Similarly, Janine was followed by a cardiologist for 20 months because of holes in her heart (PDA and VSD) that we were told would require surgical intervention if they did not close on their own. We were on our “last chance” echocardiogram appointment before surgery would be necessary, and lo and behold, the heart issues also resolved!

At this point, one wonders if many in the medical establishment do not present a prognosis in the most guarded or pessimistic way. Perhaps they would rather be wrong by a happier outcome than the other way around. However, when the very life of a baby is involved, as in prenatal diagnosis of a serious condition, I would hope that all decisions come down on the side of life. We didn’t know that Janine would have Cri-du-Chat syndrome before she was born, but we cannot imagine her any other way. She is greatly loved and has blessed us in ways we never could have imagined.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.