Does she have Down's?

We have not had a lot of sleep recently from Miss Tiddler. I hate to moan about that, you see we were blessed from about week 2 of her life to very good sleep, interrupted only by us waking her to feed. It seems she shouldn't really have been this sleepy but we didn't realise this at the time.

Anyway, after a few particularly sleep deprived nights, I decided to take Tiddler to the GP yesterday as I know one of the reasons behind her being disturbed is constipation. Sorry Tiddler, yes I am discussing your bowel habits on the internet. I wanted to check out the medication she was already on. My surgery were great at squeezing her in to be seen same day, I think this is a common baby policy... However this meant that we saw a new Doctor, never seen before.

Medication all okayed, and a brief chat ref. Tiddler's diet - "Do you give her fruit and veg?" Errr... no shit Sherlock- I was at this point inwardly rolling my eyes but reminding myself that she probably does have to tell some people this...

I then asked whether her Hypotonia could be the reason she is plagued by constipation? She said that yes, in her opinion it could and that low muscle tone in the bowel could definitely occur in someone like Tiddler. She then looked at Tiddler who was wriggling all over me at this point and asked "Does she have Down's Syndrome?"

My world went funny, I went dizzy, I couldn't breathe, I burst into tears. Looking back, did she say that or did she say "She doesn't have Down's Syndrome...does she?" I don't think it matters. I couldn't believe she was asking me this. Why was she asking me this? I could not stop the tears. Dr realised at this point all was not rosy and changed her tack. "OOooo yes, things can be hard when you have a child with health problems..." I was steeling myself for the "Have you got much support?" question when I blurted out how insensitive her question had been, how it had been asked before, how did she think that question made a parent feel? And in any case why did she say that as Tiddler didnt look like she had Down's, did she???

To give her credit, she backed down fairly swiftly, explained she hadn't meant to be insensitive, said no Tiddler didn't "look" like she had Down's but that sometimes you can't tell visually in any case. I more or less held it together till I left the surgery, and then bawled my eyes out.

You see, when Tiddler was born and transferred to SCBU on Day 1 of her life, people started to comment on her appearance. They used the word "dysmorphic" a lot. She had a battery of chromosomal tests or "karyotyping". A midwife came to SCBU to do a post natal check on me. Chatted for a few minutes, walked round to look at Tiddler, look at me and then said "you had the nuchal test, didn't you?" The only conclusion I could draw from that question being that she too thought Tiddler looked different and possibly had Down's.

Also, for months we had been receiving hospital reports that duplicated the last known diagnoses/ issues in bold at the top. Imagine reading a report that drops on your mat telling you again that your baby has "dysmorphic features". Its a horrid, cruel term. I flagged this up in the end and it was agreed that it was no longer the case and so removed.

That is just like the insensitive GP yesterday. Sometimes, healthcare professionals forget what words and labels actually mean and what it feels like to hear them, if you are a Mummy. The GP yesterday, given that she didn't know us, could have asked me to run through Tiddler's history quickly, or to ask if we had a diagnosis etc. Surely her NHS patient database flags up any diseases / conditions that each patient suffers from? If she had read even one entry in Tiddler's notes she would probably have gleaned enough information. If Tiddler did have Down's - it was still an insensitive sledgehammer approach that would have caused upset.

So yes I am angry, it still hurts to think about it but I am very pleased I managed to challenge her. I wouldn't have been able to do that before.

After Birth Story Part 1

The birth itself was fine. This irony was not lost on me- the girl who had spent 10 months (they all lie about the 9 mths) in abject terror. More about that another time.

I was induced a little early, again for reasons I shall not go into here. I had a fabulous midwife, hitch free delivery, no stitches. Hell, I didn’t even get any pregnancy induced stretch marks. Smug? A little.

Tiddler passed the Apgar 9 and then 10, she was put on my chest and all was well. No-one told me, and if they had I would have told them where to stick it, but if you batter the old gas and air like your life depends on it you will be a space cadet for several hours. I did, and I was.

I cannot remember much of the hours after Tiddler’s arrival. We were kept in the delivery suite for HOURS though, as initially Tiddler’s temperature was too low and then there was no bed for us on the main ward. We had a surreal picnic of Brie and prawns eaten off a clinical metal trolley. I had been one of those stupendously paranoid pregnant women and avoided all foods that had the merest hint of controversy.

Six or eight hours later, thinking about it I actually don’t know when , but while still in the delivery suite, Tiddler jerked in her crib and went purple. I mean purple. Ribena berry purple. I will never forget what it looked like. I immediately said to her Dad that this was not right, something was wrong, he initially thought she was fine and tried to reassure me not to panic. She was making a weird rasping noise. She wasn’t breathing. I panicked. It’s funny but in these situations you just don’t think straight sometimes. I went outside to get someone, couldn’t see anyone... went back in the room, I think I called the “normal” bell… no answer. It took a good few seconds for me to really shout and get help. Isn’t that stupid? Tiddler is our first child, we didn’t know what was going on, but still – stupid.

I can’t remember at which point help arrived, they used suction and got her breathing again. I don’t remember much of a hullabaloo. God knows if anything is even in the notes (must remember to look into that). As quickly as she had got into difficulty she was fine again, my baby was back. I was terrified but no-one else seemed to be making a big deal about it.

At some point after, we were transferred to the main ward. I remember the feeling of pride as onlookers cooed at Tiddler in my arms. This was to be the only time I held Tiddler in normal surroundings in “public” for weeks. It was something I looked back on and wished for again and again, to be able to show off my new baby.

After a major meltdown upon arrival in the main ward precipitated by 4 days of very little sleep, chemical craziness from gas and air and the small fact of your baby stopping breathing, we were quietly moved to a side room. However, within minutes it happened again. Tiddler went purple, the same horrific hue, the same noises. This time I didn’t fuck about. Straight to the emergency bell. FYI, they work pretty bloody quickly and effectively too. Within 20 seconds we had a room full of medical staff. Same thing as before, suction, obstruction cleared, Tiddler breathing again. This time though I really lost it. I hadn’t got over the meltdown on the main ward and I was beside myself, really frantic, terrified that Tiddler was going to die.

Luckily, the Supervisor of Midwives was one of the army of staff that had rushed to our room. Upon examination of Tiddler on the resuscitaire, she expressed concern that Tiddler was “floppy” a term we would hear again and again and called SCBU to come down and look at her.

Within minutes Tiddler had been taken away from me into the “hot room” of SCBU. The nonchalance we had encountered before had disappeared and things suddenly turned a lot more serious. We were told by the Supervisor of Midwives that my husband could stay the night in the hospital –in the ward. This was much to the consternation of the ward midwife, so we made a friend there…  

(to be continued)

Videofluoroscopy, not a computer game- Tiddler's test

Today Tiddler had a Videofluoroscopy. She has had problems with her swallow for some time, I had to stop breast feeding due to her poor co-ordination of breathe and swallow (another story, and another blog post).

The latest concern that our Speech and Language Therapist had was that she was "pooling", my understanding of this is liquid / food gathering in her throat. They needed to check that her swallow was safe, and so the best way to do this is by using the Videofluoroscopy test. I have to say that for some time I have thought something was up as after feeding she sounds "gurgly" and like as if you opened her mouth you would see a pool of milk gathered at the back of her throat. Apparently, in the trade, this is called "pooling".

The test is a collaboration between Radiology and Speech Therapy, a fast succession of pictures are taken as fluid / food is swallowed. Tiddler had to feed/ eat her milk, water and purees as normal while seated in a special seat. All 3 had Barium in them - to show contrast in the pictures. Tiddler wasnt bothered about the taste of the Barium, apparently its rather inoffensive which was a blessing. The puree in particular turned into what looked like polyfilla! Tiddler managed though and fed obligingly.

The pictures were fascinating, really interesting. Although I was concentrating on feeding her so could really watch as much as I would have liked, you could see a cross section of her face, throat and neck and what looked like black liquid moving down her throat and neck.

The test itself only lasted 5 mins, it took longer to mix her milk and food with the polyfilla! Tiddler was absolutely fine, a non-intrusive test so she was non the wiser. They could see straight away that she wasn't pooling so thats great and means her swallow is safe. This is great and means I am less scared about T having more lumpy food. They could see though that she has a "delayed swallow" - she swallows too late? Don't quite understand this.... the Speech Therapist is calling on Thursday to discuss. They said to be careful after she eats, to not lay her down too quickly in case she hasn't swallowed. With her reflux, we keep her upright anyway so that's fine. Will wait to see what this "late swallow" means.

I am relieved. All systems go on solids again I hope.

It was a bit upsetting in the waiting room as I had waited there 8 months ago when Tiddler was 3 days old. I vividly remember sitting in this horrid, clinical cubby hole and I remember praying over and over again that she would be ok. She had been transported by a Dr from SCBU to radiology in her incubator, a tiny tiny baby- MY tiny tiny baby in a plastic box having one test then the next and the next. That time, at 3 days old she was having a Barium Swallow to check that she didnt have an obstruction in her stomach.

We are a bit too familiar with the hospital, I hate that we know our way round so well, we recognise lots of people and they us, and that poor Tiddler has been tested by nearly every department now, and a couple more than once! Happily however, the tests - the serious ones at least- have all given us a big fat negative, and we are very thankful for that and the fantastic care and resources that they have bestowed upon us.

Breakthrough in diagnosis for Congenital Heart Defects

In the news today it has been reported that a currently little used test on newborns could help discover congenital heart defects. The test measures the oxygen levels in the blood and is easy, quick and non-intrusive. Got to be good. The study looked at 20,000 babies and it detected 75% of all critical cases (those that result in death or surgery within 28 days of birth) and 49% of major congenital heart defects (causing death without surgery within 12 months).

At present, ultrasound scans examine the heart antenatally and newborns also have basic cardio/ respiratory tests. Some of the stats above account for babies whose heart defects were uncovered via these existing methods, but the total number of cases discovered still represents an impressive increase.

However, what is personally interesting is that the oxygen testing wrongly identified some babies as having congenital heart defects, although I haven't been able to find exact figures for this.

When in SCBU, Tiddler was diagnosed as having PDA, VSD, and something else- memory hazy- I can hardly remember this- we had so much else to worry about I remember saying out loud that we would deal with the heart stuff later. Crazy really to think I said that but we really did feel as though we were taking an hour at a time sometimes.

On discharge from SCBU, we asked our consulant whether Tiddler's could be a self-resolving issue and he said most probably not. Happily, and to cut a long story short this is not the case and Tiddler has no heart problems- a Cardiac Echo when she was a month old confirmed this.

I sometimes wonder whether with advances in medicine we get a bit too clever for ourselves, in our case ignorance would have been harmless... we would never have known about Tiddler's heart problems as they self resolved. In pregnancy I also had scares as a result of ultrasound scans and all was fine. Don't get me wrong, I am no Luddite. I love the NHS, I am thankful every day for the medical advancements that have kept Tiddler safe and obviously I see how fantastic any improvement in the diagnosis of heart defects is. I just worry that people think its a panacea. I suppose though the benefits clearly outweigh the risks of mis-diagnosis. It is better to diagnose too many children including some incorrectly than miss a diagnosis altogether I suppose? We are fortunate that Tiddler's cardiac issues resolved and we know it.