Obvious solutions, people!

My husband seems to have bad karma when it comes to toasters. He destroyed our very expensive 11 year old Dualit toaster, that we were given as an engagement present, with a potato farl. Instead of using the toast tongs that were attached to the side of the toaster, he kept pushing on the lever handle more and more aggressively until said potato farl got mashed to a pulp and spread all over the toasting filaments. A classic example of when an obvious solution completely evades a rational, intelligent human being. I mention this because I’ve just toasted a crumpet and the toaster smoked like it was sending signals across the prairie. I looked inside the toaster to see there were cinders of various sizes inside the toaster causing said smoking. I then spent five minutes removing all crumbs and cinders from inside the toaster so that it will now not smoke. I have to add that that was the first time I had used the toaster this week. My husband uses it all the time.

I can’t blame my husband. It seems that there are solution evaders in all walks of life. The one that has really got my goat at the moment is doctors. Moo has had a tracheostomy since the day she was born. At first, it was clear that she needed one as she had absolutely no airway and, without it, she would die. Obvious solution. Over the years, however, she has improved to the point that she now wears a Passy Muir speaking and swallowing valve for up to 12 hours a day. In tracheostomy terms, this shows that she has a very good airway around her tracheostomy because those things are permanently closed and only open when she breathes in. They are very hard to tolerate if your airway is occluded. Each MLB (micro laryngo broncoscopy, the op she has every year to check her airway and see whether her trache is ready to come out) she has had over the last three years has shown no change whatsoever, despite her growth and the fact that her Pierre Robin (cleft, abnormally small jaw) sequence has self corrected and her jaw is now in the normal position. Each time, her consultant mentions that Moo’s mouth doesn’t open that wide and it is a hindrance.

After her last MLB, I started thinking. Could the fact that her jaw does not open that wide be the reason that they can’t see her trachea safely? If they can’t see her trachea safely, they can’t remove the trache because she is classified as unintubatable. If she was knocked unconscious without a trache, they could not guarantee they could intubate her and save her life so the tracheostomy has to stay put.

So I go to an appointment at the cleft clinic at Great Ormond Street, where all of Moo’s complicated care is, and mention this to the doctor. The doctor talks to the ENT registrar. The ENT registrar talks to me. It is possible to make a jaw open wider. It’s not easy and it doesn’t always work but it is possible. There is a potential problem with the larynx that would mean it would be pointless and, if Moo’s consultant thinks she has this problem, there is no point trying. He’ll talk to the consultant and get back to me. I get a call a couple of days ago and the consultant thinks that, actually, it’s worth trying.

Basically, after three years of no change, there is the chance that widening her mouth may result in her being able to be decannulated and get rid of the life threatening tracheostomy. Now, seriously, why has no one thought of that before? Doctors are so stretched that they see patients, deal with what they see and can treat but all thinking seems to stop there. Could there be a way around this problem, could there be something we could try to make things better?

When Moo was a baby, she could projectile vomit about 30 feet. It was impressive. She managed to vomit across a brand new Starbucks; the carpet, the coffee table and the brand new leather sofas. My NCT group were shocked. The Exorcist had nothing on this baby. It was evident from birth that something was going on when she ate. It started with her wiggling and looking uncomfortable. She had terrible wind. At three months, the vomiting started and just got worse and worse. At first, it was only a couple of times a day, then it was after every single feed. We would keep her quiet and still for an hour and a half and hope it would stay down. Sometimes, it did. St George’s diagnosed reflux, our local hospital agreed with them. She was on Domperidone, Ranitidine, Gaviscon; the maximum doses of all three. The vomiting continued. She had two 24 hour pH studies done, numerous barium swallows; all of which showed minimal reflux or none at all. The hospital insisted it must be reflux. She vomited on doctors and nurses and, even though the milk would look like it had come from straight out of the bottle an hour after being ingested, they still said it was reflux. My mother said “maybe she has an allergy”. I told her the doctors would have thought of that. I was recovering from my trauma and only after six months on medication did I feel like my normal self and started thinking about it. At which point, Moo had been on medication for 10 months, to no avail. Finally, I put my foot down and demanded that they try changing her milk. So she went on Nutramigen which improved things slightly. Then they changed her to Neocate which your body has to learn to digest because it is milk broken down to its amino acids. Ten days later, the exact time it takes for the body to learn to digest it, and Moo stopped vomiting, completely. The irony is that she grew out of her allergy eight months later.

The doctor said, “so Moo has a milk protein allergy”. Really?! No shit, Sherlock. You let her suffer for ten months without thinking about it. She was on seriously strong medication for no reason. The only reason they found out about her allergy is because I put my foot down.

My cousin has just had a baby. Said little dude is suffering with all manners of trapped wind. The story sounds familiar. Has he been tested for intolerance or allergy? Apparently not, as the doctors will only do that as a last resort. Is it just me or is that ten tonnes of stupid? A child may or may not have an allergy to milk but they’re going to make the child ingest it until they have tested every other avenue. Here’s an idea. Why not test for milk allergy or intolerance first, rule that out, then move onto reflux? To treat an allergy you change the milk, to treat reflux you have to dose the poor child up with meds and get the balance right. However, if a child has an allergy, no amount of medication (which costs the NHS thousands) is going to help.

The moral of this rant is really this: if you think you have an idea of how to solve a problem with your child and you are dealing with the establishment, speak up because, if it’s obvious, they won’t have thought of it. They simply don’t have the time to analyse and think about each and every case. And sometimes, the most obvious solutions are the ones that are missed completely.


Shooting Star and what it means to us

Shooting Star CHASE is the local children’s hospice that literally saved my life. When Moo came home from the hospital for the first time at nine weeks old with a tracheostomy, just before Christmas, she also came with a chest infection and no care package. Here I was with a 9 week old baby that I had tried to have for 5 years and she required 24 hour care. Her airway was utterly blocked and she was fed by naso-gastric (NG) tube. She had had a 6 minute cardiac the day she was born as they tried to intubate her for surgery. Her life depended on my being on the ball. If her trache fell out or got blocked, she would die, quickly. She required feeding every 4 hours, day and night, and would pull out her NG tube. The nurses wouldn’t train me to put one in while I was learning about the trache so we would have to go to hospital and wait around for someone to be free to do it, often in the middle of the night.

My family live abroad so couldn’t help, even though they desperately wanted to. My in laws, some of whom live close by, were too scared of the whole thing. I tried to do it all by myself, as Mr G returned to work after Christmas, because I didn’t have a choice. Every where I asked for help, I got turned away, except for by Shooting Star. I started to have anxiety attacks, became very depressed and went to the darkest places in my mind. Finally, while a couple of the nurses were at my home during a Hospice at Home visit, I was woken with a shock and had one of the worst anxiety attacks of my life and nearly fainted. They took one look at me, called the hospice and had Moo admitted for a two night emergency stay. We ended up living there for three months while they campaigned on our behalf to get us the care package we so desperately needed. They wouldn’t let us go home until we had it in place. I received psychotherapy and was diagnosed as severely traumatised. With medication, time to recover and the support of Mr G and Shooting Star, I returned to my normal self. Without them, I wouldn’t be here now. To this day, they are still the only practical and respite support that we have. No one else is trained to look after Moo, it’s just Mr G and me.

Every year, they hold a Christmas Carol service for the families that they support. Last year, I offered to do a reading. This is what I read:

Hi. My daughter, Moo, has been supported by Shooting Star since she was 9 weeks old and released from hospital. She’s just turned 6. When I volunteered to do a reading, I was very confused about what to choose. Christmas, as well as being a time for thanksgiving, is also a time of reflection for me. So I thought I would share some of our story with you and how life has not turned out quite how I planned. God had other plans for us and He really does know best.

I’ve wanted to be a mother since I was an egg. I have had a blessed life, wonderful friends and family, challenging and fulfilling jobs, foreign adventures but all I’ve ever really wanted was to be a Mummy. I was going to have four children. My husband wanted two. We still needed to discuss that. However, like a lot of people, our path to parenthood was long and traumatic. It took fertility treatment and two years and 11 months to get pregnant the first time. Our son, Ziggy, was stillborn at 5 months. Two years later, after failed fertility treatment, we got pregnant naturally. After yet another traumatic pregnancy, 9 weeks of labour (yes, I am that hard core) and a c-section, our amazing, beautiful daughter, Moo, was born. We were thrown into the world of life threatening conditions, hospitals, hospices and special needs from the moment she arrived. Life was so hard. This was not the parenthood we had envisioned. It took me 18 months to apply for a blue badge because I could not see that Moo was disabled despite having a tracheostomy and pronounced motor delay. She was just my Moo, my beautiful girl. Then I read something that brought me comfort and, bizarrely, peace, which I would like to share with you in a moment.

As for us, we are a very happy family of three with three cats. Life is different for us than most of our friends. Moo continues to face challenges but handles them with such grace and always has that beautiful, joyous smile on her face. She is so strong in spirit and mind, very funny and full of life. She is our inspiration and our joy. Our version of parenthood may be very different and can be very, very hard emotionally but we wouldn’t change a thing. We have gained far more than we have lost. I, personally, have learnt so much. I am far stronger, wiser and more compassionate than before this journey. I have met some truly phenomenal people who I admire so much who dedicate their time to families like ours but, most of all, I am so grateful for the children I have met. The angels on earth, like my Moo, and those who have gone to Heaven. I think of them all the time. All have touched my heart and proven over and over again, that just because you are different, it does not mean that you are less.

Now that reading:


Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy . . . and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very, very significant loss.

But . . . if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.