The morning after Wade was born, we were lounging around in bed waiting for the paediatrician to come and give his assessment as to whether Wade had DS or not. We already knew that he did but this was a necessary procedure as you need an official diagnosis by blood test which has to be ordered by a paediatrician. They also assessed him to see if there were any underlying health issues.
My sister, Sammy, was there when the paediatrician arrived. He also had with him, a visiting paediatrician and a trainee. So, I’m in bed with Wade, Mick was at home getting a few things and Sammy is sitting on the bed too. At the foot of the bed is a wall of doctors. They take Wade to examine him and the two paediatricians explain everything to the trainee. They pointed out all of the physical characteristics of DS to look for when doing an assessment. They pointed out the single crease across the palms of his hands, the sandal toe, (the oversized gap between the big toe and the others. This is my favourite characteristic! It’s so cute). There was also the smaller gap between the creases of the little finger. The extra fontanelle, the almond shaped eyes, the epicanthal fold in the corners of his eyes, the flattened nose. They discussed how often the ears are set lower, although Wade doesn’t have this. They demonstrated the low muscle tone by holding him face down over the palm of their hand and watched him droop. They explained how babies without low tone straighten out like a board instead of drooping. They checked his hip flexibility and breathing.
They determined that he most likely had DS and ordered the blood test. I asked a few questions about what we need to do next and so on. Then they were gone.
Sammy asked how I felt about all that. I told her it was fine and it had to be done, why?
She told me she had sat there mortified as the doctors prodded and poked, and flipped him around during a cold and analytical procedure. She told me she was protective of me at that moment as she would have found it very emotional. She also told me later that when she realised that I could see it for what it was, she knew she didn’t have to worry about how we would cope anymore. That is the ultimate in support from your family, I think.
During my research before Wade was born, I had read a lot of information that suggested that it would be difficult to breastfeed a baby with DS. Often babies with DS have a relatively smaller mouth but a larger tongue. This, combined with the low muscle tone can cause the tongue to protrude out of the mouth. It also means there is less room inside the mouth. Low muscle tone can also mean that the babies can tire quicker causing attachment issues. I had been told that if I wanted to breast feed, I should never give the baby a bottle as it would be much easier for them to drink from and they wouldn’t go back on to the breast again.
I had plenty of trouble with breast feeding but none of it had anything to do with Wade or Down syndrome. His mouth was fine and he was able to attach. My problems came from me and my uncertainty. I didn’t know what I was doing for a start.
I have nothing but praise for the Birthing Centre that I went to. The philosophy there is to be guided by what the woman wants and needs. I felt supported and I was treated incredibly well. They were there to help me every step of the way with the feeding. Wade wouldn’t attach very well to begin with and he would give up easily. I was adamant that I was not going to give him a bottle as I thought my breast feeding days would be over. The midwives helped me express the colostrum and we fed him with a cup to begin with. We were manually expressing which was painful and took ages. I thought that all the measurements they were taking, how long he fed for, how much I expressed, when we fed and so on, were very important for their records or something so I would wait for the midwife to arrive before I started trying to feed him. After a couple of days, we really hadn’t got anywhere and I needed to be transferred out of the birthing centre and into the main maternity ward as the room was needed. They were concerned with the amount of milk I was producing and the fact that Wade wasn’t attaching properly. What I didn’t know was that they were obviously concerned that I didn’t have the hang of this thing and needed more help.
Over in the main ward, I was getting nowhere too. Different people were telling me different things about how much he needed to drink and how to do it and I was told that I should give him the bottle. I sat there waiting for the nurses to help me feed him and gradually, I was getting more and more stressed. Finally, I had a bit of a meltdown which neatly coincided with the day 3 blues. I told one of the nurses that I didn’t get what I was supposed to do or when, or what to do if the nurses weren’t around.
She said, “He’s your baby. Feed him”
She got me a motorised pump and set me up with a system of trying him on the breast, give him whatever I had expressed previously in the cup, express again for the next feed and repeat. Do this every three hours.
I was just what I needed….a slap in the face.
I needed someone to sit me down tell me exactly what I needed to do, how I should do it and to bloody well get on with it. I needed to be reminded that I am the mother, this baby is my responsibility and I have to find a solution to this problem. Then I was fine. I’m sure most women appreciate the softly, softly approach when it comes to breastfeeding support but it would appear that I respond better to the subtle as a sledge hammer kind.
We got into a rhythm, I had a system and all of a sudden I also had milk. We went home the next day. I was flying. I still needed to express but Wade was feeding well. A nurse from the hospital came the next day and a couple of days later to check on our progress and she was really happy. Wade was putting on the right amount of weight, I was happy and feeling pretty good about everything so she said she didn’t need to come for the last visit. The next visit would be from the Maternal & Child Health nurse in a few days.
And then it all went to crap.
The woman that came had the most patronising, judgemental tone when she spoke to us. First she wanted to know whether we had filled in some survey, that had been sent before she arrived. (Sorry, I’ve been a bit busy being a new mum, feeding a newborn with zero sleep). She got so irritated that we hadn’t. Then she proceeded to second guess all of our parenting decisions up until now. Nitpicking at things that were not that important. It was like she had the parenting handbook and if I wasn’t doing everything to the letter, I was failing miserably. She also kept mentioning her sister’s children which led me to believe she didn’t even have any kids of her own!
At some point I mentioned that he had Down syndrome and she got very annoyed that no one had told her this and suddenly she was as nice as pie to us. Her manner and tone changed and suddenly we were great parents. Unbelievable. So I don’t deserve any respect and consideration unless my child has a disability?
Her change in attitude was too late, the damage was done. Within 12 hours of her being in my house, my milk supply dropped. Then I got some advice from a telephone support service. Their advice was “Babies are perfect and breasts are perfect. Babies only drink what they need and breasts make all the milk you need. Just keep breastfeeding and everything will be fine”
More like, just keep feeding and your baby will drop 300g in a week because he is not getting enough food!
This all combined with me trying to work through all of the information about accessing disability support services, registering the birth, organising a paediatrician, MCH appointments, no sleep, visitors. I was in information overload and I’m not even sure whether all of this is exactly as it happened, because it was all a blur.
I went to see the paediatrician and his advice was most helpful. “I know you want to breastfeed but if he doesn’t start putting on weight, he will end up being fed formula through a tube in hospital.”
I set up a new system. Breastfeed all I had, feed him all the expressed milk from earlier, top up with formula, express for next feed, wash all the equipment. Repeat every three hours. This process took an hour and a half to complete! It was crap but he started putting on weight, then after a few weeks, I dropped the formula and eventually dropped the expressing a few months down the track. It turns out that my milk supply was completely dependant on how much I doubted myself as a mother.
Lots of doubt = no milk!
It also turned out that he was able to drink from a bottle and go back to the breast! I guess I learnt that even though the information that is available might talk about what commonly happens, don’t assume that will always be the case with you. Every time I have presumed that Wade won’t be able to do something because of DS, he has gone on to prove me wrong! I had forgotten the philosophy I had intended to apply from day one. Presume he can do everything and if he can’t, then go to plan B. Don’t underestimate him!
I had other times where I felt stressed and worried and my supply dropped but at least I knew why and what to do about it. After this I managed to feed right through. I am still giving him a feed in the mornings purely because he wakes up at 6am and I don’t like getting up that early so I bring him into bed with us and we lounge around, play games, have a drink and a snooze! It’s a little indulgence I will have to give away someday I suppose.
Edit: I forgot to mention that I did use a slow release teat on the bottle. The Medela Special Needs teat. It won’t release the milk unless the baby sucks so it is more like breastfeeding than just pouring it down their throat. It has a variable aperture as well to control how hard the baby has to suck to get it which is handy.