Archive for the ‘Dealing with Doctors’ Category

Monday – Music Therapy and Speech and Language Therapy

Tuesday – nada

Wednesday – Physio

Thursday – nada

Friday – Physio and Hydrotherapy

Maybe that doesn’t sound like a lot to you. Maybe you are thinking, “Isn’t Stacie on maternity leave? She can fit that all in.” Or, “An hour or two a day, every other day isn’t much for May.”

So also, please consider the monthly visits by May’s community therapists (OT, Physio, SALT)? And Small Steps School?

Not to mention each of these people give May and I homework and that homework takes hours in itself.

At what point is May doing too much? Let me rephrase that. May is doing too much. I’ve already removed her from Small Steps – which was a hard decision months in the making. Everyone at Small Steps was a huge support to us. Why did I do it? Several reasons:

1. May couldn’t do three therapies on Fridays. Even I know that is too much for a toddler.

2. Small Steps is the furthest away and the longest session (2 1/2 hours) so it would take that much more out of May than the other therapies.

3. I can’t handle it.

That’s the truth. I can’t handle day-in-day-out of meetings with specialists that I know can help May – or, worse meetings where I know they won’t help May. Meeting after meeting where well-meaning people sit down with me and we discuss how disabled my daughter is. How she needs standing frames and future wheelchairs and hoists to get her out of bed. How she needs splinting and lycra suiting. How she needs to try chewing with solids, sipping from cups, assisted standing. How we must do for her what she can not like brush her teeth, dress her, hold her chin so she can chew better. How when we dress or bath her we must support her in ways so that she can support herself and encourage her to reach.

I struggle to see, not only how I can physically do all the above x 10 in one 24-hour period, but also bear the weight of the constant voice in my head, “May can’t. May can’t. May can’t. You must.”

I have a splitting headache.

Here’s my final thought. Every time one of them comes to my house and sees my May-bell in her Bumbo seat, they say, “As May’s physio/OT/bum off the street, I have to tell you that May really shouldn’t sit in that chair/She’s too big for it/She’s going to fall over/Shouldn’t push back like that it’s a bad habit.”

Here is a question for them: Do you see her smile?

How can I take away her Bumbo? No one has suggested another means of letting her experience independence. This is the only time she spends on her own, entertaining herself all day.

Every meeting opens up new questions. What I want is answers.

You can read more from Stacie over at BabyCenter.


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If I can't see it, I'll eat it!

I will remind everyone reading this that I’m not a doctor since I’m about to explain how vision develops in a baby. (Feel free to correct me.)

There are two aspects of vision: mechanical and cognitive. Mechanical is how the eye moves, focuses on things, etc. Cognitive is how the brain reads, identifies and remembers what you see.

The two are very different and yet they work in conjunction with one another. So, when May went to her first eye appointment (lots of fun, you can read here), the mechanics of her eye were fine, but the nerves that grow at the back of the eye and link the eye to the brain were not developing.

Why not? Because the brain received information from May’s eyes, but the parts that could read that information were, shall we say, unavailable. Children are not born with 20/20 vision. The develop their vision for the first five years of life, so if May’s brain can’t read what she sees, her vision as a whole is effected.

To go a step further, even though the mechanics of May’s eyes worked initially, in order to progress they needed her brain to be registering what they were seeing.

Does that make sense?

I condensed over a year of my own research into four short paragraphs so feel free to be confused. For further reading, I would suggest Cortical Visual Impairment by Christine Roman-Lantzy.

Indulge me for a moment.

This was the single most challenging issue to find any information about. It took me over a year just to find it. I asked every doctor I saw. Every single one, even the ones I respect the most, told me there was nothing I could do. Worse, they had no information to pass on to me. That is how little is known about visual development in babies, let alone brain damaged ones. Furthermore, later I discovered that some of the doctors knew about the Great Ormond Street Hospital Developmental Vision Clinic and didn’t suggest it to me. Once I found it, on my own, they were reluctant to refer me to it.

Why is this?

In every physical way, May has therapy. In every cognitive way, May has none.

Why is this?

I must not be the only parent who is desperate for information to help their brain damaged child develop cognitively. I don’t need to say how important vision is to development.

You can click on the Visual Development link in my right side bar to read about some of the things I’ve been doing with May to improve her vision. And, it is improving – just slowly.

Next month, May goes to the famous Moorfields Eye Hospital to have her vision evaluated (mechanically and cognitively) on the suggestion of the head of the Developmental Vision Clinic at Great Ormond Street Hospital. It would have happened earlier except I had a little issue getting there during the past month. That little issue being a new little baby.

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Happy 4th of July everyone! And, of course, Happy 5th of July for us – the big due date!

Tomorrow, May becomes a big sister! If all goes to plan and the baby is healthy, there is no telling how beneficial the little one will be for May. For us all! So, there is a lot to celebrate around here.

If you want to know anything about the baby’s arrival tomorrow, please check on BabyCenter. I asked my husband to upload a photo and info on to their site. I can’t really ask him to do the same here, when all you have to do is click over!

I’m not sure exactly how long it will be before that photo goes up, so don’t panic if you don’t hear anything from us by tomorrow. Both of us will be pretty exhausted!

In the meantime, get a load of Big Sister May in all her American finery. The gorgeous woman supporting her in three of the photos is her Grandma Barbie, here to meet Peanut, babysit May and nurse Mama Lewis back to health post-op.

Wish us luck!

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Yesterday, I attended a cesarean clinic at my hospital’s birth center. During the clinic, a midwife prepared me in the same way as for a normal operation: pre-op instructions, blood samples, necessary prescriptions…

I thought it would be reassuring. The midwife would explain the before, during and after op, and I would ask all my serious and silly questions. When I saw my consultant on Thursday, he said not to worry, whatever I wanted, she would write it down and it would be done on the day. No problem.

Except, for the midwife, there was a problem. Several. There was a problem with the timing of the meeting; she kept looking at her watch. There was a problem with all my requests; like getting skin to skin contact since they need to wipe and warm the baby first. But, most importantly, there was a big issue with my requests about post-birth care of my baby.

“Because of my previous birth history, I wondered when the baby would be checked out by a pediatrician?” I asked.

“Oh, usually they examine the babies 24-hours after the birth. But, it’s not a problem, one of the midwives will do an initial check.”

My insides twisted up inside of me when I heard that. “Is there any way we could get someone in sooner,” I asked.

“I doubt it. The doctors really don’t like coming down earlier than they need to if the baby presents okay.”

She already asked a detailed round of questions regarding May’s birth, so she knew the circumstances. Yet, while we spoke, she jotted down notes in my file – mundane things like, “swab provided” – while simultaneously speaking from script. There was nothing ordinary about May’s birth, but she gave me the brush off in the manner people do when they think they’ve heard it all before.

Therefore, when she said, “The doctors don’t really like coming down…” I fell into a kind of emotional coma. Inside, I screamed, “They can’t come down one flight of stairs and check on a baby that might die? What? What?”

But, on the outside, I exhibited no signs of life. Instead, I calmly said, “Issues with my daughter weren’t discovered for 12-hours. I don’t want that to happen again.”

Very casually, like we were discussing food on the ward, she asked, “And, what kind of signs were those?”

I collapsed inside as I delivered a list of a series of symptoms that anyone, medically trained or not, would know could kill a newborn: “She wasn’t breathing. She had major seizures. She wouldn’t feed. She didn’t cry.”

She is unfazed. “Well, if that happened, I can assure you a doctor would come down immediately. And, there will always be midwives on hand to check her.”

“No offense, but there were midwives on hand to check May as well, and when I thought she wasn’t breathing, my midwife didn’t even pick her up to check her vitals. I’d really feel more comfortable if a pediatrician could check the baby over as soon as possible.”

The midwife looked at her watch again and said, “I would like to say I could guarantee that, but I can’t. So, why don’t you ask the team on the day and they will see what they can do. And, if that is all…”

I was encouraged to leave. And, I’m ashamed to say, I did. I left. I found myself smiling at her and walking, of my own accord, out of the office, down the hall, into the elevator and out the hospital doors.

For the next three hours, I didn’t do anything. I didn’t listen to any music on the drive home. I didn’t eat any lunch when I got there. I sat at my kitchen table and I stared into space and thought, “No one is going to watch out for my baby. My baby is going to stop breathing and I will be too tired and drugged out to realize.”

Finally, my husband phoned to see how it all went. As soon as I heard his voice, I sobbed. I told him what happened. He was furious. “What is wrong with these people? Don’t they know that May almost died?”

“I tried to explain,” I said, feebly.

He calmed his voice. “I know you did, honey. Who did you talk to? I’m calling the hospital. I’m calling them right now.”

Ten minutes later he phoned me back. “Don’t worry. I spoke to one of the obstetricians. He is putting in the request now, a pediatrician will examine the baby. There was no question. He didn’t argue with me. He was in total agreement.”

He gave me the number of the doctor, who I called. By the time I got a hold of him, the request had already been made and filed. “Don’t worry,” he said. “You are completely right to worry. There will be no problem having a pediatrician look at your baby. It is totally justifiable.”

I felt so much better. But, so much better is still not the carefree mother-to-be I was when I entered the hospital yesterday. The midwife – that insensitive and irresponsible woman – reminded me all too clearly that the care you get greatly depends on who you get on the day. Fingers crossed it isn’t her.

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You’ll excuse me if the following sounds a bit clinical, but it has taken me almost two years to put May’s delivery into writing. I find it easier to deal with if I am straightforward, so I’ve left out a lot of my own personal thoughts or fears at the time.

I don’t write it for sympathy. I don’t need comforting. I write it because it has been two years and it is time to move on.

WARNING TO PREGNANT LADIES: Do you really want to read this? It doesn’t end well.

When I was pregnant with May, there was no sign that anything was amiss. Nothing. In fact, I felt exactly the same in that pregnancy as this one. That is either very worrying or reassuring, depending on how I wake up on any given day.

So, when my waters broke, no one fussed. The midwife visited me at home to test my waters for infection and told me I could labor there for up to five days if I wanted. (I didn’t. FIVE DAYS!)

The following day, I received a call from a different midwife who told me my waters had tested positive for Strep-B. This is an infection that can kill babies, so I urgently needed to come to the hospital. The process of all this happening, from waters breaking to booking in, was 36-hours.

Once there, it was another five hours before a drip with Penicillin was administered to fight the infection. Still, I had no contractions, so they decided to induce.

A drip of Pitocin was administered and I went from no contractions to full, constant torture in under ten minutes. From then on, I had an epidural.

I pushed for a long time before a doctor checked and discovered that I wasn’t fully dialated. This was the first time, since I arrived in the hospital, that I saw a doctor. By this point, we were already over 60-hours since my waters broke.

The doctor asked me to make a choice: continue to push (as the baby didn’t show signs of distress) or move to the operating room for further assistance. At this point, I hadn’t eaten or slept in days. My body shook with exhaustion, but also a reaction to the epidural. I thought I was going into shock.

Once in the operating room, May was delivered fairly swiftly. But, her arrival only came after a failed suction, and successful forceps delivery. She had a gash on her head from the failed suction for days afterwards. Really, you would have thought she’d been in a car wreck not a delivery.

May after delivery

That is the reason why I didn’t question her not wanting to feed, or shaking, or any other signs that I now know were signs of distress.

May was rushed to the Special Care Baby Unit the following morning after a midwife recognized she was seizing. She stayed there for almost six-weeks.

But, what exactly caused the brain-damage? We may never know for certain. A lot of people have theories. A midwife for my current pregnancy, told me that Strep-B needs to be treated with Penecillin within 18-hours of the waters breaking to be effective. Strep-B is known to cause brain-damage. The obstetrician assigned to my current pregnancy believes it was the combination of a protracted labor with the Strep-B. My mother thinks it was socialized medicine.

I’ve always thought it was a combination of a lot of small things that isolated would have caused no harm, but together damaged May irrevocably.

We don’t know what the future holds for May. We aren’t deluding ourselves, which I’m thankful for; she is severely brain-damaged. Our goals for her have much more to do with independence (feeding herself, using a toilet) than they do with attending a university.

We haven’t sued anyone. We looked into it, but it is a very difficult case to prove. So far, it doesn’t look like we have one. But, that might change.

Here is what we focus on: our love for May, the joy she gives us and the security we can give her.

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This week has been a tough one for May. In some ways, it was a very normal week in terms of illness and a baby. Sleepless nights. Struggling to get food and drink down her. Lots of tears (from her, but I felt like it at times).

May received her MMR and flu vaccine last Friday. Her fevers started on Saturday. Her seizures on Tuesday. Her first full meal again on Friday.

She’s lost a lot of weight, which is worrying. More worrying, her seizures reappeared, mainly disturbing her sleep – four so far tonight. Fingers crossed, once she puts a bit of weight back on, they will go.

Illness, even one as minor as this, is always a reminder of how close we came to losing May to begin with and how tenuous our hold on her health is today.

But, one thing we do not worry about is how much it all costs. Before May’s birth, I sometimes entertained thoughts of moving back, not permanently, but for a year or two so that I could reconnect with family and show May what being American is all about.

That fantasy, like many others I had before I knew her, vanished after her birth. But, in this case, it vanished because I knew the reality of living with a severely disabled child in America would bankrupt us.

Firstly, May has a pre-existing condition. We could get insurance, but the premiums would be astronomical. If they weren’t, I imagine the deductibles would be.

Instead, I live in the UK where I pay £121/month (about $190) towards National Insurance and nothing else. When I lived and worked in America, over ten years ago, I paid over $200/month, plus, a deductible whenever I visited the doctor or had an x-ray or anything, really.

We never worried about the cost of May’s injuries. Furthermore, we were saved the additional misery of begging an insurance company to cover tests they didn’t want to.

I was reminded of this when I read the article ‘The High Cost of Healthy Babies‘on BabyCenter this week.

So, what would May’s first six-weeks of life have cost?*

($3,500 x 40 days) 24-hour Neonatal Intensive Care Ward

($2,625 x 2) Brain MRIs

($1,100 x 5) Brain CT scans

($1,100 x 2) lumbar punctures to draw up cerebral spinal fluid

$152,950 in total (about £91,770)

I assume here that cost of a 24-hour stay in the Neonatal Intensive Care Unit would include medicines, blood tests, oxygen, food, diapers, heart monitoring, neurologist’s assessment… of these and many other things, May received many times over.

I think there will be some, particularly some Americans, who may read this post and think, “Ah, yes, but if May had been born in an American hospital, she would have been born healthy and, therefore, never would have racked up such bills.”

I could point to statistics that show America’s health care system is worse than Britain’s. But, the truth is, I think if May had been born in any other hospital, or by any other team of midwives, or on any other day, she would have been fine.

I think that is a “what-if” conversation for another blog. For now, I’ll just take comfort that I live in a country where May does, at least for now, receive all the treatment and care she requires, and these treatments do not break her family financially.

*Costs taken from  www.comparemricost.com and American Medical Association.

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My daughter has seizures every day. At one point, they were as frequent as three times every five minutes. That is 864 every day.

Did I just write that? May had over 800 seizures a day?

As I mull over those numbers, a nauseating weight grows in my belly.  Yet,  I’m thinking even worse things; like… those were only the ones we saw. Some seizures don’t manifest themselves physically.

It is a horrible thing to say, but May’s seizures were so frequent, that I’d discuss them as casually as the weather. If people stopped to ask if she was shaking from cold or fear, I’d respond, “Oh, no need to worry, it’s only a seizure.” They all looked at me like I was insane. Most asked if they should call for medical assistance. “No, it’s fine,” I’d say. It’s a wonder Social Services never knocked at my door.

I should add that the doctors don’t think the seizures will damage her brain any further. But, seizures that frequent do interrupt activity and, therefore, could be hurting her long-term development.

Fast forward six months. May is now on her sixth medication trial. And, we think it is working.

It has been a very slow process, made slower by the agonizing time-lapse, sometimes weeks, until a drug starts to take effect. Then, an even longer wait as the drugs are slowly built up in the system in order to see if they really work to remove the seizures entirely.

When we started May on Toparimate, it we saw amazing results, but then May regressed and her seizures returned. They never returned to 3x/5 minutes, but we did sometimes hit 3x/10 minutes.

As the Toparimate seemed to help to some degree, we kept her on that and started her on Sodium Valporate. Another nail-biting three weeks of no change, and then one day, we noticed a marked decrease.

During the time she was seizure free, she made all kinds of progress. And, she was just happier. Who wouldn’t be?

But, if May is tired, ill or teething, the seizures return. So, the past couple weeks we’ve experienced days with a couple of seizures in total, and days of two or three/hour, still a vast improvement.

At some point, we will have to weigh the balance of drugging May more and possibly hurting her development as a result, or her enduring some seizures but less medication. This week, we meet with the Boss, who will advise.

(This is a bit sneaky of me actually, as this appointment was made back when we waited three months to see him last time. I “forgot” to cancel it. Some genius thought it was a good idea to schedule an appointment for a child having 18 seizures/hour, five months later.)

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