Sunday, 19 April 2009

Our fourth child, our 3rd son (Part Two)

(Please note the following story is my own, and is not permitted to be copied or shared in any way, shape or form. So to the pictures that are my own. Please respect that while yes I am sharing this in the public world of the Internet, it is our story)


The drive to the hospital was hard. So many questions flying through our heads. One main question staying in the front. "Is he ok?" It was all I wanted to hear an answer to. Is my baby healthy in every other way.
We arrived at the hospital and headed towards the maternity section. Hub had called ahead so they knew we were coming. The receptionist had us fill in forms and for some reason admitted me and bubs. I assumed it was due to procedures for payment by medicare.

As we sat there waiting to be called in, the women behind the counter, who was also a midwife looked at us and said "You know the best part about homebirths? No mess for us to clean up" and then she laughed.
I just stared back at her. Kind of not registering. My heart and soul were focused on my son right now, what was she on about? For the record there is very little mess in a normal birth. We had a big paint drop sheet laid out, with lots of towels on top. After bubs and I moved to our comfy bed Hub just tied it all up and chucked it in the bin. Easy.
Days later when I thought back to that moment I wanted to scream. How dare she make a mockery of us being there. She saw our son. She knew why we were there.
It says more about her though. Her lack of empathy, understanding, and knowledge of normal birth. Sad really.

Soon after we were called in a 'delivery' room. (I loathe the term delivery. Babies are born, their mothers give birth to them. They are not delivered) It was just awful. Exactly as I pictured one of their 'birthing' rooms to be like. It looked like a theatre room. There was a large open cupboard full of medical equipment. There was a very uncomfy chair, and a hospital bed, crisp, hard sheets, and pillow. There was no curtain as the window was blurred. The light was pouring through the windows. The noises coming in from the corridor were so loud. Talking, clanging, doors. The smell was also overpowering.
I started crying, and hub asked what was wrong. I said "I am so glad he was born at home"
A older looking man in a white coat and a woman also in a white coat walked in. He said Hi, and she introduced themselves to us. They asked to see our baby. This was the first time we had handed him to anyone. They put him in one of those awful plastic tubs and undressed him, so he was naked. He started crying and my heart broke. The doctor said something about how he has a nice loud cry. I mumbled something about how it was the first time he had cried actually.

All I wanted to do was grab my baby, but they kept looking at him. The doctor then started the hard sell on the vitamin K. It was the last thing on our minds. His birth was very straightforward and they themselves said how perfect his head was and how healthy he looked. We were both still shocked, and very vulnerable. The midwife who was there now started pushing too. It was for the health and safety of our baby, we want him healthy don't we?
When I think back now I am furious. After lots of research also, there was no need whatsoever for him to be injected with vitamin K.

Finally they were finished and motioned for one of us to come dress him. He was back, safe in our arms again.
The next thing we know we are asked if we don't mind some students coming to see our baby. Again, not being in a full alert state of mind we said ok. Within minutes there was 6 or 7 people crowding around us, staring at our baby. Only one of them, the last, a woman, smiled and us and said thank you for letting me see your baby. The coldness was freezing in that room.

The Doctor, who was head Paediatrician admitted to never seeing a birthmark like our sons. He explained it was called a Nevus and how this size affects on in half a million babies. I burst out crying and sobbed "Was there maybe something I did or ate or anything, in the pregnancy"
He said no, not at all. Nevus is neither sexist or racist, it touches anybody, anywhere in the world.
He said as far as he knew there was nothing that could be done. He woffled on about a friend he had in university who had a birth mark on his face. This friend lived life to the full. I was hearing his words, but not listening. I was focused on the fact said our son would stay like this forever.

He was my newborn baby, not even 24 hours old but I loved him fiercely. He was perfect in my eyes and always would be. But I knew how cruel the world could be, and I was petrified for him, for what the future held.

Then, as low as we were the woman doctor went and got a camera. She asked if she could take pictures of our baby. Another thing that makes me so angry when I look back. I can understand their interest, as they had never seen one. But the lack in sensitivity for us as parents, and as me as a mother who had just given birth was non existent. I was sore, tender, and my heart was aching for my new baby.
Hub held our baby as she took some pictures.

They spoke about how some Nevus on the head and scalp can go deep under the head on on the brain. They wanted to book bubs in for a MRI. They explained nothing could be done if there were lesions on his Brain, but an MRI would tell us if there were.
An appointment was made for the MRI and also a follow up with this same Head Doctor. We got up to leave and I asked if there was anything else we needed to do. The woman doctor smiled and said "Just take him home and love him"
Who says that?! Argh. I don't think she meant it in a harsh way, but I still feel strange about her saying that. Like we didn't know that already.

More tears flowed as we drove home. We talked about what they said, about how scared we were for him as he grew older. How unfair it was for him, a new baby, he never asked for this. He was new and prefect in every way. There was no reason he should be given this card.
Was there really nothing that can be done? There mustn't be, he was the Head, he would know.

When we got home we were quickly thrust into the circus of life. Children needing dinner, clothes to be washed, bathes to be had, bedtime stories to be read.
And of course the baby, like all babies, needing feeding and changing. That night in the shower I cried so hard, and so much my throat hurt and I couldn't cry anymore. This was not fair. Why our baby? Our sweet, gentle baby boy.

As the days went on, life did too. Nothing stops just because you want it to. You can't get off, you have to keep going. Just like our other children, when they were babies, we fell more and more in love with our new baby as the days flew by.
His older siblings never left his side when they were home. He was no different to any other bay to them. He was special, as he was their brother.

Hub was home from work for a few weeks, so he dove right into the internet. Searching for many hours in the day. He came across a support network for Nevus in Australia.
He read through stories and looked at photos of other babies and children and called me over to look to. We sat together and looked at the pictures. There were pictures of surgeries. But that Doctor said there were no surgeries?
We were confused, but also keen to learn more. Within a few days we had learnt about the several surgery types for Nevus, and the stories and journeys of some of the children.
We soon discovered that NSW and Victoria both had teams of specialists, dedicated to this and other rare birth marks.

My feelings were very mixed. The Doctor did not know any of this. He told us things that are actually incorrect. I was both angry, and also not wanting other parents to suffer through what we had. (Months later, I called the same Doctor and told them everything we had been through and learnt. I gave them the details of the support group, and also of the teams in NSW and Vic who specialised. I told them I didn't want wrong information going to another parent.)

It quickly became clear that we had to move. Our baby needed to be near those professionals who specialised in Nevus.
I still do not know what to call what happened a few days after we realised we had to move, but it still amazes me.
Hub got a call from a recruitment agency in our home state. They had been looking for a specialist for some time and were not having any luck. They were very keen to interview him. 2 days later he was hired over the phone and arrangements were on the way to getting us home, and closer to the specialists.
We were sad to leave as we had made some wonderful friends, but they understood that family comes first. We drove all the way home, which was fun. We kept looking at eachother, amazed at how awesome the kids were being. At one point I wondered who had taken over our children's bodies. The trip was long, boring, and at times freezing, but we made it.

Hub started his new job not long after we got back, and we had an appointment with a children's plastic surgeon and birth mark specialist.
The time leading up to the appointment seemed to drag on and on. In between Hub decided it would be a great time to get tonsillitis. But not the normal kind, oh no, he had an abscess. It was just awful for him, ok and us too. So he had them taken out.
We just ooze excitement in our family. Always something going on!

I was so nervous on the drive to the specialist. I guess I after our experience with the hospital I was still feeling vulnerable. Again here we were putting our trust and naivety into someone else.
It turned out to be a great talk. The surgeon was very friendly, honest and told us everything he knew about Nevus, both from when he started out, up until the latest research.
He showed us pictures of before and after from the several types of surgeries. Explained what type of surgeries are best suited for certain parts of the body where a nevus may be.
He also told us all the down sides of surgeries. What can and has gone wrong. We greatly appreciated his no nonsense and honest approach with us. He explained that there were very little to no sweat glands in our sons nevus. This is why he was warmer than a normal babe, as the heat could not escape his body and head like a normal baby.
He knew all about the support group and said they are a great resource and support. This was very reassuring, that he knew about the group.
We talked more about the different options for the different areas on our baby. We agreed that we would go home and talk more about what we want to do in regards to surgery, and also ask questions and chat with members of the Nevus support group.
The following months flew by. Our baby was growing so quickly, and adored by his older siblings. Life carried on, as close to normal as possible. School, kinder, sport, activities, family outings. There was always something going on. Something to keep us busy.
Our son fitted in perfectly with all our goings on. His birthmark, while prominent blended in to us. We could see it yes, of course, but we didn't notice it. It was like hair or eye colour, nose or ear size.
We were only reminded when we were either asked, or when people stared, and sometimes sadly, pointed, or nudged a person beside them. We were so strongly protected earlier on. People were going to look, yes, we got that, but some were extremely rude and harsh.
It was very hard to deal with. He was just a regular baby. Happy, smiling, laughing, enjoying others company. Strangers did not see that though. They saw the birthmark and that was it.
When he started smiling it did help a little, when we were out and about. He had, and still has, the most gorgeous smile. Those looking at him smiled back. A small exchange from him to them, showing them he was a happy baby.
A few times while at a park or shopping, someone would look over at our son, and I would notice. But understood, as I would look too, let's be honest. It is very large and back then was still quite dark. Then I was pleasantly surprised to hear "Excuse me, I hope you don't mind, but I was wondering about the mark on your baby" The first time I was shocked at first, and took me a few seconds to register. But then I smiled and though, wow, how great for someone to ask, and want to know more.
Children, in our experience, are very sweet, and don't hold back. They will come over and ask straight out "What is that on the baby's face?" If I don't respond quick enough one of the children will jump in, and give their spiel on nevus and all about what it is, etc It is warming to see them talk about their brother, and spread the word about Nevus.
I will leave it there for now, again, as this has taken 3 days to write! Why do children need 8 meals a day? Surely one would be enough, I have writing to do. Yes, of course I am kidding. A little.
Here is our baby a few days old. We were very grateful to those parents who posted pictures of their children on the support group and felt strongly to do the same for those who would come after us.
This picture shows the side of his head. The nevus went behind his ear and stopped at the back of his head, then all the way over the top, and to the front.



Within a few months our baby was smiling, laughing and loving lots of love and attention from everyone.

Here is another side view, he is approximately 7 months here. You can see the nevus is lighter then when he was born and it has stretched a bit, and is not as lumpy now as his head has grown.

Here he is the same day as the pic above, with his Daddy. While all our babies have been happy, this little guy seemed to smile non stop. You would just look at him and he would smile. He is still this way now (unless he has a toy taken from him by his baby sister)

3 comments:

Sazz said...

Wow! I'm amazed how much T's mark has changed over time. That first pic it looks as if it would be a painful mark, obviously it's not, but I can imagine being afraid for my baby too.

I forget how much you have been through and how hard this journey can be. I'm so used to seeing you holding it all together, confident, answering questions, seeing the day to day parenting and the nevus mark blending into the background of that, like hair and eye colour, as you say.

I'm used to seeing T as well. When I saw you were writing about his birth I thought "favouritism!" lol "why isn't she writing all the birth stories?" and then was reminded as I read on that his journey is an extra special one. A far cry from the first time I saw him when all I could see was his mark :( I fucking HATE that that is how most people see :(

Hearts and Hands said...

Yeah, it is a shame that people see him and his birth mark straight up. But after nearly 3 years I am ok with that. I try and put myself in their shoes, never seeing a birthmark like that before. Doesn't ease the anger, but does help a litle.
Also, anyone who spends more than 5 minutes with him quickly see the boy inside, and his big smile and beautiful spirit.

tiff said...

He is amazing.
You are amazing.