Some lessons babies taught me

This time 21 years ago, I was eagerly looking forward to having my second baby, and to helping to heal the first child’s actively managed hospital birth, by having this birth in the comfort and security of our own home, with our trusted midwife, Ann Kelly.
I resented having to get up to the toilet at night as the growing baby took up some bladder space. It hit me one evening, braving the cold outside the bed covers, “there’s a person inside me!”.. I can still feel the shock, the realisation, the “don’t be such a bloody moaner”; count your blessings!
I called out Ann Kelly 10 days before my due date, with vague contractions and what became a thumping headache. She stayed with us overnight and when she took my blood pressure, she told us gently and firmly we needed to go to hospital. We had no car, and no arrangements to care for Darragh, nearly 7 years old. So she drove us to hospital and had Darragh to her home for the day.
A lovely midwife said into my ear, as I heard our baby’s heartbeat on the scan, “dear, we have to lower your blood pressure and we have to deliver your baby.” 2 hours after arriving there, Oisín was born by caesarean section under general anaesthesia and I had round-the-clock midwifery care for 48 hours until my blood pressure stabilised.
I don’t remember when I first saw him. I only know that whenever I woke, I begged to see him and to have him breastfeed.
We were in hospital for 10 days and lucky to have a midwife sit for 3 hours one night helping us to get a comfortable position and latch, made difficult with the c. section scar.
I recognised the kind midwife (who had taken the time to explain what was happening) 3 months later when I was back in hospital for a kidney check-up. I had no visual memory of her (apparently due to high blood pressure and medication) but I knew her voice and thanked her for taking the time to treat me as a sentient being.
There was so much to deal with in the aftermath, happiness at Oisín’s health, sadness at not having the homebirth, scar healing and a windy, sometimes unhappy baby. The words of one doctor were ringing in my ears: “I know homebirth is a nice IDEA but you’ll never be a candidate!”
4 homebirths later, the first 20 months after the c.section, I know that it’s possible to be grateful for medical expertise and yet seek other opinions and research; to count the blessings of a healthy baby and alive mother but still mourn the experience I’d hoped for.
I treasure the words of Mary Cronk, amazing midwife:
“SOME BIRTHS IN SOME CIRCUMSTANCES NEED SOME HELP”
I guess the expertise comes in knowing which are those births!

Discovering Our Baby Has a Condition

Discovering our baby has a condition
Once upon a time, a boy was born in January, beside the fire in his parents’ bedroom. He had 4 older brothers and a sister and he was ADORED. His mother was 40 years old, celebrating this milestone a few months before her eldest turned 21, and felt very blessed to be gifted with such a joy. Like his siblings, he was carried in a sling and breastfed whenever he wanted and life was just peachy.
When he was 5 months old and liked to sometimes lie on a blanket on the floor, he started to get bruises on his back. The first time, the family tried to reason what had caused this. He had startled in his mother’s arms; maybe that had somehow been the cause? The family often welcomed foster children… could some-one have hurt him? But he was never out of sight and hadn’t cried or been upset…
Two weeks later, he was having a bath with his mother and she saw a great fat purple-black bruise, like a slug, on his back near his shoulder. They had been at a birthday party with a bouncy castle but he had been in arms the entire time and nowhere near the castle….it was a mystery. The parents went to bed that night thinking “who can we ask for advice?” In the morning they thought of the lovely midwife, K, who had welcomed him with them. She was very clear. This needed investigation. So for the first time since his postnatal check, he saw a doctor.
“Tell me what you think it might be” his mother asked, as she was told to go to the hospital for tests.
The doctor didn’t want to guess. So the mother decided to list out anything awful she could think of so she would hear this expert deny it.
“Leukaemia” she said.
“He’s too young.”
“Haemophilia” she said.
“Your father would have to have it.”
He wrote the referral letter for them to attend the paediatrician in the hospital 30 miles away.
“No rush” said the doctor kindly. “You could go tomorrow.”
But she had to know as soon as possible.
She drove there that day and waited while the medics tried to get a blood sample from her distressed son. Then home and distractions, waiting to hear.

The phone call the next afternoon was quite casual.

“Something was a bit strange with one test. Please come in tomorrow to have it repeated.”
No clues, no hints.
“DON’T look on the internet” his aunt advised.

It was the day he turned 6 months old- Wednesday July 23rd 2008. She took a photo of him in a lovely outfit friends had sent from Australia.
20141103_103210_resized

That would always be the photo of the day the world changed. The day when not-knowing became knowing.
The blood test seemed harder.
They tried to get it from his foot. But the flow stopped before the vial was full. The junior doctor said he would go with the sample and implore the lab to try to test it, as they often found it difficult when there wasn’t enough in the vial.
The baby calmed and nursed.
“What does he eat?” asked the paediatrician.
“He’s fully breastfed. He‘s six months old today.”
“So you’re going by the WHO guidelines?” said the paediatrician.
“It’s what I’ve always done. He has 5 siblings from 21 to 4. None of them had much interest in solids before 8 or 9 months of age. The guidelines kind of caught up with me.”
“But you give vitamin D?”
“No. As I understand it, the issue is about sunlight and if we get 20 minutes even in December our pale skins can..”
“3 hours per week“ he interrupted impatiently. “We can’t tell Irish parents that… they’d park the babies down the garden for that length and burn them!”
The room began to fill with student doctors, some of whose skin colour at our latitude might need more than 20 minutes to get their requirement of sunlight for vitamin D so the conversation ended.
The bruises were photographed.
Somehow the time passed.
A nurse said “If we don’t find a blood-clotting disorder, we will be talking to social workers.”

She did not know what to pray for.

And then it was explained: it’s the APTT blood clotting test. Normal clotting time is 38 seconds but his was taking 73 seconds.
The doctor phoned a haematologist at Our Lady’s Hospital for Sick Children in Crumlin, Dublin.
“She says, a male with that clotting time, almost certainly it’s haemophilia. Go to Crumlin tomorrow and they’ll do more tests.”

Haemophilia
Czars of Russia
Rasputin
Bleeding to death from a cut

That was all she knew
Lovely, blessed, cocooned ignorance

The phlebotomist in Crumlin was quick and sure when it came to taking a baby’s blood test so the distress didn’t last past a quick cuddle and breastfeed. The results would be available on Monday.
Somehow, the weekend passed.
There were lovely calls and emails from worried family and friends, promising prayers and candles and novenas and support. There was the usual family life of laundry and meals; routine things keeping a scaffolding around them as the world changed forever.

So on Monday, July 28th they were told he did indeed have Factor viii deficiency, Haemophilia A, severe. His body made no Factor viii (8), a blood clotting factor. The factors are like dominoes, the parents were told, so when 1-7 work fine , they try to set off 8 which is absent so 9+ can’t do their job. The most likely scenario was the baby would have bleeds into his joints which if untreated would cause arthritis. These would begin when he became more mobile and was walking so from around 2 years of age, he would need transfusions of Factor viii three times a week, for the duration of his childhood.
“We’ve never used a playpen” said his father. “Would it be helpful for him?”
“The bleeds are spontaneous” the doctor explained.
“What if we pad everything he might come into contact with when he’s walking?”
“The bleeds are spontaneous.”
“What if we…”
“It’s SPONTANEOUS bleeding” the doctor emphasised.
“Oh, so it doesn’t matter what we do?”

The hospital appointment explained many things. 30% of cases of haemophilia are new mutations, so having no family history. It’s rare enough.. About 100 people share the diagnosis in Ireland.
The specialist nurse and doctors assured the family the Factor was no longer from human blood but a recombinant product. Small children’s treatment was about €500 per dose, which the tax payer covered.
A social worker explained the supports that were available and asked them how they felt.
What the mother wanted to say was “stuff all the free meds and supports! I just want my little boy to be healthy.” So she said nothing. They went home with books, leaflets, a DVD, information about the Irish Haemophilia Society.
Time passed as it does.
The boy started to walk. He didn’t have bleeds.
She took him to Lourdes.
Twice.
He turned two years old.
They dared to hope he might be in the 10% who didn’t have joint bleeds.
He turned three years old.
And then one day, on St. Patrick’s weekend in March 2011, his leg was swollen and hot and he couldn’t walk. So he and his mother stayed overnight in Crumlin for treatment with the factor viii replacement transfusion. The hospital discussed starting regular treatment.
“Maybe it’s a once-off? Can we wait and see?”
But at Easter, he and his mother were back in overnight in the hospital for treatment.
He began receiving treatment every Monday, Wednesday and Friday.
In July he had a port-a-cath fitted in his chest so his parents could do his treatment at home and not have to travel to hospital so frequently.
When they go to hospital they see children who are very sick and so they try to count their blessings and be grateful.
Sometimes the boy asks why does he have haemophilia and he says how wishes he didn’t.
So does his mother.

Weaning gradually, with love

If new breastfeeding mothers had a cent or a penny for every time they got asked:

“How much longer are you going to nurse that baby?”

“When are you going to wean?”

“Surely she’s too old for that now?”

they’d probably have a good start on the child’s college fund.

When two of our six were tandem nursing, I was told authoritatively by a family member:

“You have NO LIFE!”

which meant: “you can’t come to concerts and the pub and places where real life is happening because you’re always with those babies!”

Ah those babies!

Little hands, little gurgles, little night time snuffly noises when they wake to nurse and don’t have to work themselves up into a frenzy to find you because they’re right beside you in the big bed and you can just snuggle and think of all the women who right at this moment are with their breastfeeding babies throughout the world:

in hammocks

on straw mats

in apartments

in farmhouses

in one-room dwellings with three generations sharing living space

in penthouses/palaces(?)…

you get the idea.

I found it hard to watch the news when my babies were very small. Any story about children being hurt, by accident or evil; any sad family tale would cause me to be a snivelling wreck (and the empathy with suffering people only deepened with each new baby). A side-effect of mothering hormones?

Language is so important.

There’s a wonderfully warm, supportive facebook group in Ireland called “Extended breastfeeding”. I joined before the membership was 100 and now it’s over 4,000. But what counts as “extended”? (Certainly, a distractable 5 month old wanting to watch their sibling playing and forgetting to unlatch before turning their head during nursing might fit the bill!)

There have been times I have answered the “and how long did you nurse your babies?” question with a truthful-but-not-the-whole truth reply on the lines of “well, they all had the World Health Organisation and Irish Department of Health’s recommended 2 years and beyond”…

The last child to wean was curious as to how long each of his siblings had nursed. On hearing that one had weaned at 3 years and 2 months of age, his thoughtful six-year-old reply was “that sounds like an early time to stop breastfeeding.”

Now, where could he have gotten that idea?!!

LiveLoveLearn

I love how our experience of educating at home means that learning is never confined to a set time or workbook or subject or curriculum.

Last night, as our youngest, Eamonn, aged 6, was snuggling at bedtime he was excited about the story he wants to write.

“What will you call it?” I asked.

“I’m thinking” he replied.

He got his brother’s clipboard, an A4 sized sheet and drew lines on it for the words. He’s not quite reading yet so asked me to spell each word and wrote 3 sentences before realising that maybe he could dictate and I would write for him.  He read back each sentence before composing the next one. He wants me to keep it secret until it’s finished but I can tell you it’s about a hobbit called Nora.

It reminded me of his eldest brother Darragh, now 27, then aged 6, returning to Dublin from a visit to my parents in north county Wexford, coming back by the last train, making our way through the streets on a bus, writing sums (4+6=10) on the fogged-up bus windows. When we got back to our home in Harold’s Cross, he asked to do a page of sums so I scrabbled around for a page of a workbook we’d been sent by his Grandma TC, a 4th grade teacher in Chicago, who wanted to support his learning as much as she could. I remember my feeing of disbelief… a child would ASK to do sums, at ten o’clock on a Sunday night? No-one told me children were this curious, this motivated, this fired up to learn, with no outside nudging or pleading or bribing or rewarding.

We filled the A4 sheet with words and Eamonn needed to think about his hero’s friend’s name so decided to sleep on it.

He moved the page and pencil to the end of the bed, arranged his Turtle and Blue Bear and snuggled up, yawning.

“Oh, I’ll call it ‘Lord of the Rings 2’ “, he said.