Letting Liana Be

Like many parents of sick children, I was projecting my feelings of fear, disappointment and total anguish on to my daughter. She was recovering mentally quicker than I was. I was holding her back
Olivia Hart
National Post
National Post
Olivia Hart, right, with her two-year-old daughter Liana and Liana's nanny, Beth Veloria. "Each day I came home to a happier, more confident child," Hart notes.
National Post
With Beth, Liana quickly began reaching her milestones and surpassing them.


The best thing I ever did as a mother was hire a nanny for my toddler. Because of what had happened to our baby, I had become obsessed with her medical condition, and the only thing that got me out of my obsession was hiring someone to look after her.

This is the difference between normal parents and parents obsessed with their child's medical condition: When someone with a cold comes to visit our home, we don't just worry that our kid might get that cold, we worry that this might mean another trip to the hospital with pneumonia or RSV (Respiratory Syncytial Virus). And then, who knows, another blood transfusion? Or possibly respiratory distress? And, God forbid, another visit from the hospital's minister.

My daughter, husband and I are survivors of the neonatal intensive care unit (NICU). We are among the thousands of families who have gone through what can only be described as an unimaginable parental nightmare. After you've had to fight every day for your baby's life, it's hard to let go of that intensity once you take your baby home.

When my daughter was born she was in respiratory distress. She was taken away from me -- blue, and struggling to breathe. We were told the next morning that "we'll have to see if she can make it these next 48 hours." This wasn't the last time we would hear this. In fact, my husband and I were told three times that my baby daughter "might not make it" through the current bout of blood poisoning (sepsis) and/or pneumonia.

A "highlight" of our eight-month hospital stay was holding my three-month-old baby while two nurses quickly shaved her head with a Lady Bic razor because they needed to find a suitable vein on her scalp. I held her head as they pricked her 11 times with a "butterfly" needle to try to start an IV. If we didn't get an IV going she would die of septicemia.

Luckily, my baby's screams were inaudible because she had a breathing tube up her nose that went to the back of her throat and into her lungs, keeping her vocal cords permanently open -- deleting any sound. She was swaddled with a blanket to keep her from writhing with pain. This was my baby -- and I was forcing her to keep still.

She was absolutely helpless and from the day she was born had to resist every natural instinct she had. There was no warm breast she could suckle, no soft kisses from those who loved her, no falling into sleep nuzzled next to her mother's chest feeling the soft vibrations of a lullaby. All she knew were piercing screams from ventilators and monitors, pain from surgery, pain from tubes and dozens and dozens of needle pricks.

This was my baby, I thought, as I kept her still. My husband came in to relieve me so I could throw up in private.

- - -

My daughter was a "mystery" to the dozens of medical staff in the departments of respirology, neuromuscular pathology, genetics and neonatology. After three months of each team taking their best shot at trying to figure out what was wrong with her and millions of dollars' worth of tests that kept coming back "normal," they still had no diagnosis or prognosis. The only thing that was clear from the beginning was that the right side of her diaphragm was paralyzed and it had pushed her liver and her right lung up so high that only her left lung was helping her breathe. Yet, the doctors told us, her other symptoms didn't sit right with them. They kept performing tests to find some kind of syndrome or disorder. Finally we had to say enough.

They settled on "low tone" as a diagnosis. What did that mean? Her muscle strength was low? Well, it's true my daughter sure wasn't doing back flips on her hospital bed: Attached as she was to a breathing machine, feeding tubes, and wires attached to monitors, it was almost impossible for her to move.

What they meant by low tone, they said, was a progressive degenerative neuromuscular disorder. Basically, we were told that if Liana survived all her life-threatening blood infections she probably would never walk, talk or breathe on her own. We were devastated -- and confused. I asked what indications there were that this was what she had. The specialists explained that she didn't move her hands above her head and she didn't kick her legs much. I told them she did, when she could breathe.

Immediately I got the look. The look a doctor gives a mother who is in denial. I was determined not to be that parent so I kept quiet, pretending to agree sometimes so I could get more information (especially when we were lucky enough to have a specialist "grace" our child's bedside).

But I didn't think the diagnosis was correct. My daughter would move around, smile, kick her feet and lift her arms over her head to grab a toy -- always, of course, when the doctors weren't around.

At least I had the hospital's occupational therapist and my daughter's nurses backing me up. We even called a multi-disciplinary meeting to state our case. But the old hierarchies still reign in hospitals. I remember in that meeting the hot new neuromuscular pathologist defending her reputation in front of the nurses, occupational therapist and respiratory therapists (people who interacted with my daughter daily): "I wish I were wrong," she stated in a condescending tone over and over.

Well, she was wrong and never came back to tell us the news that my daughter's muscle biopsy was normal.

- - -

After eight months in the NICU, I brought my baby home from the hospital. Our homecoming wasn't filled with the typical struggles and frustrations of new mothers -- sore nipples, sleepless nights, wailing screams and out-of-whack hormones. Instead of sleepless nights due to hungry wails, we had piercing screams from my daughter's ventilator alarm, and suction machines that sounded like lawn mowers. Not only was I a new mother, I was now also a pediatrician, nurse, respiratory therapist and occupational therapist.

I felt I had to quit my job to take care of Liana: No one else, I believed, would be able to look after her the way I did. Which technically was true -- it was even difficult for us to get night nurses because most nurses do not have experience with babies that have tracheostomies and are ventilator-dependent.

(But my view that I was the only one who could take care of her also came out of our hospital experience: I learned quickly that while in hospital you absolutely must, parents listen, I repeat, must, be with your child every minute of the day no matter how exhausted or sick you are. Mistakes happen all the time, no matter how nice the nurses and staff seem. You are your child's, especially baby's, only voice.)

Not trusting anyone else to care for my daughter and taking it all on myself squashed one set of fears but opened up entirely new ones. If something were to go wrong now, there would be no one else to blame. Still, trying to cope with what had happened, I desperately tried to make our lives somewhat "normal."

I was bent on proving the doctors who continued to state that she had a neuromuscular disorder (even though she began to sit up by herself) wrong. The fact that I was no doctor, let alone a specialist, drove me to work (more like keep the pressure up) with Liana each day to reach her developmental milestones. But no matter how hard I tried to hide my feelings of fear, disappointment, guilt and total anguish from my daughter, I still projected them onto her.

"That happens more often than not, I'm afraid," says Dr. Karel O'Brien, a neonatologist who runs the neonatal follow-up clinic at The Hospital for Sick Children in Toronto. "We see many cases where a child exhibits a fear for something that should not be there except for the fact that the parents have that fear and are projecting it onto their child."

By way of example, Dr. O'Brien explains how a baby she saw acted as if it hurt her to lie on her stomach because of a small hole with a feeding tube that went directly into her stomach. "We know that there is no pain associated with this type of tube, yet her parents felt that it must hurt their baby when she lies on her tummy. And as soon as their baby went to roll over onto her tummy there was one of the parents picking her up and preventing her from doing it. Even after I told them that there is no pain with this tube ... they didn't believe me."

Liana was nine months old and wasn't crawling or moving like other babies, but mostly she was absolutely afraid of everyone and everything. I worked with an occupational therapist who came to our home, and just the sight of her made Liana scream and shake with fear. We gave up on the OT but I was determined to work at giving Liana the best help I could to get her moving like other kids. I bought developmental toys, read books on development, and searched the Internet constantly.

I realized then I was becoming obsessed with her "condition." It consumed me, it drained me, it made me extremely hurt and stressed. Our "training" sessions -- me lying on a mat and trying to coax her to move from a sitting position to pulling herself up onto something -- usually ended with tears. When I stopped the training sessions, she began to do things on her own -- on her own time. Whenever I forced her into a position she became afraid. She didn't trust me either -- remember, I was the one who had helped force the pain.

Hospital staff had kept reassuring us that Liana "won't remember a thing." I realized they were wrong. She too was going through post-traumatic stress. Her subconscious was scarred. In fact, in 1999, the U.S. Center for the Advancement of Health conducted a study in combination with Washington University School of Medicine, British Columbia Children's Hospital and Arkansas Children's Hospital. They examined a growing body of evidence about the long-term effects of early pain and stress on human infants.

"Pain and stress have been shown to induce significant physiological and behavioural reactions in newborn infants, even those born prematurely," said Fran Lang Porter, PhD, lead author of the study. "While it remains unclear whether young infants can remember painful experiences as actual events, there is evidence that memory for pain may be recorded at a biological level. At six months of age, however, most infants appear capable of remembering -- displaying fear in anticipation of a previously experienced painful procedure."

Three other NICU mothers I keep in touch with all say the same thing: Their child is petrified.

Realizing that for my daughter I had become someone to fear unleashed all the feelings of guilt I had been trying so hard to keep a lid on. Which led me to try even more "developmental" tactics. But they didn't work. Liana became less confident, and she was a very angry baby.

I kept trying to make her happy, easing up on the pressure so she wouldn't be afraid. But I sensed that she was tired of me -- she just wanted to be. Her medical condition had improved -- she was no longer on her ventilator. Developmentally she was progressing, but it was too slow for me. I was still trying to grab hold of the "normal" things I had missed out on -- Mommy and tot classes, long walks with my baby asleep in her carriage.

If she didn't reach a particular milestone I would be paralyzed with fear and anxiety that the doctors would be proved right. I couldn't let go of all those feelings, all those nightmares, But Liana was ready to just be a baby. She was mentally recovering quicker than I was, and I was holding her back.

When Liana was 18 months old, I got a call from my former employer, asking me to work in a new position. I started to realize it would be beneficial for both of us for me to get back to work and to have a life outside Liana. It would be a huge upheaval for all of us -- we would be taking a risk again.

We determined that my return to work depended on finding the right nanny, and by the grace of God we met Beth. Besides being a nanny, Beth is a trained respiratory therapist -- she not only knew how to look after kids, she knew how to look after tracheostomies, suctions and ventilators.

Each day I would worry my decision would send us spiralling back into another nightmare, yet each day I came home to a happier, more confident child. I could see Liana was beginning to feel a huge pressure had been taken off her -- my pressure. She was finally able to be herself. She no longer had a hurt and obsessed mother hanging over her. I even wondered sometimes whether I reminded her of that "bad" time. As a mother I was hurt, but so relieved and pleased to see how much happier Liana had become. And each day as my baby became happier, so did I.

With Beth, she quickly began reaching her "milestones" and surpassing them. Often I would come home and be presented with a new trick or achievement she had learned that day. Now she is walking, talking and behaving like the confident little two-year-old that she is.

I asked Beth on many occasions what kind of developmental things she was doing with Liana. She looked at me perplexed and responded, "Just playing."

Olivia Hart can be reached at:  shart6@cogeco.ca

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