France, April 2003
Elsa – born 2 April 2003
I am Elsa’s mother. I live in France, in a little town one and a half hours from Paris. My husband and I are teachers and took English studies at university, so that’s why I can write in English (with some mistakes I ‘m afraid). We have a boy, Lucas who was born the 4th of January 2001. We wanted to have two children, and if possible a boy and a girl, so we were happy when the scan announced a girl.
The pregnancy was relatively all right even if I only gained 8 Kg. The delivery was rapid (4 hours) and Elsa didn’t cry, so she was taken to the incubator. They noticed a heart murmur so she saw a cardiologist who diagnosed a heart defect which will need surgery at the age of one. They did a karyotype and we were told 5 days after that she had CDC.
It was a shock! At 30, we didn’t expect something would be wrong with our child! And none of the paediatricians there knew what CDC was, they just looked on the web to get information to give to us, and, of course they gave us a black picture of it! So we came back home and tried to do the best with Elsa.
It was difficult at the beginning since she never wanted to suckle at the breast, so I gave her my milk for one month but it was tiring and I gave up since I did not have enough milk. At birth, she weighed 2700g and was 47 cm long. She has a birthmark on the forehead and nose which will disappear with time! At three months, she weighed only 4 kg and still doesn’t gain much weight. Today at seven months, she weighs 5500g, is 65 cm long and has a head measurement of 40 cm.
She has four meals per day and sleeps well (11 hours per night). She is rarely ill, and doesn’t cry anymore (that was the case when she was younger). She holds her head up, smiles (not as often as I would like), babbles, sucks her thumb, and more generally all her fingers! She’s very quiet. She’s very cute!
She goes to physiotherapy one hour per week which helps her to reach her developmental stages. At the moment we are trying to help her learn to sit and use her arms for balance. She has difficulties raising her head and supporting herself on her arms when she’s in the ventral position. She seems to have no problems with her feet. Her muscle tone is moderate. To conclude, apart from her heart defect, she seems not to have many problems for the time being. I hope it will continue like that!!!
See you soon!
UPDATE JANUARY 2004
Hello! It’s me, Elsa!
Here’s just a note to give you some news. When I was 5 months old, as I used to always turn my head to the left side, and my skull was getting out of shape, I made a short visit to the osteologist (osteotherapist), and he discovered I had a congenital torticollis which ached and made me cry sometimes without anybody in the family knowing why. He consequently reshaped my skull and my little head is now getting rounder. These visits are quite expensive (50 euros) and, of course, are not refunded at all. But, thanks to them, I am no longer suffering and am almost no longer crying any more either. Since then, I’ve been a wonderfully calm little baby.
At 6 months of age, my weight is 5 kilos 160 (a little more than 10 pounds), I am 64 centimetres and my skull-circumference (SC) is 39 centimetres. My parents have bought a U-shaped seat which, as you can guess, is designed to help me get to the seated position – but this is not a complete success yet! It was rather expensive (65 euros), but the allowance we get is made for that kind of expense isn’t it? I’m beginning to catch things and bring them to my mouth, I’m smiling more and more often, and I even sometimes burst out laughing when they tickle me (on the lower part of my tummy) or when they kiss me in my neck!
I don’t sleep a lot during the day (a little nap now and then), but the important thing is that I sleep at night for about 10 to 12 hours. I still drink my 4 bottles a day, thickened with vegetable soup, cereal gruel, vegetable and meat baby-food so that, even if I am not yet quite used to eating properly with a spoon, my food is quite varied.
At 7 months, my weight is 5 kilos 680 (a little more than 11 pounds), I am 65 cms long and my head circumference is 40 cms. My muscle tone is getting better and better, but not enough yet for me to be able to sit on my own. But I am no longer angry when they put me on my tummy; I try to turn my head both sides, propping up on my arms, but this is very difficult: for I am not a very big girl! My first tooth is cutting at that time and at the same time I am having a small bronchiolitis – but not a very serious one. Just a few calls for a little lung-physiotherapy (or: breathing physiotherapy), and that’s all!
At the moment, my parents are very happy because I am rather well: I do cough a little, due to some phlegm but, with some good nose-washings, everything gets back to normal. Anyway, I almost never complain! Because of bronchiolitis, I have eaten less this month so that, at 8 months of age, my weight is 5kilos 880 (not quite 12 pounds), I am now 65.5 cms long and my head is 41 cms. I’m cutting my second tooth – together with a small bronchitis to go with it!!
In December, I’m having an ear test under general anaesthetic (I was then a very patient baby who waited for 12 hours without eating), and they came to the conclusion that I had cerous otitis on both sides. It is not painful but, due to that, I am missing 40 to 50% of my hearing. So, they set “diabolos” in my ears (a small device in each ear to widen the auditory meatus). This should solve the problem – at least we do hope so. We’ll be seeing the specialist (nose, ear and throat doctor) in three months’ time.
Concerning my heart, there is no emergency: yes, I’ll have an operation to stop the inter-ventricle connection, but we’ll be waiting for me to put on a little more weight (maybe when I am 1 or 1 ½). I have also had an eye check-up: no problem.
At 9 months of age, my weight is 6 kilos 210 (a little more than 12 pounds ¼), I am 68.5 cms long and my head is 41.5 cms. I am just beginning to eat a few spoonfuls of cottage cheese or stewed and mashed fruit. I am also beginning to have nice siestas in the afternoons. I am becoming a very lively baby, and am making a lot of progress: I am very attentive when I look at things or people, I twist and wriggle when someone talks to me or looks after me, I can hold my rattles and shake them, I know how to make a lot of different noises with my mouth and vocalize a lot. But on the other hand, when I am on my back, I remain as such, even when I put my feet up to show that I’m happy. I don’t yet know how to turn around.
At Evreux Young Children’s Medical and Social Centre (CAMSP, Centre d’Action Médico-Sociale Précoce), where I’ve been taken care of by a psychomotricity lady-therapist since last August, a complete functional re-education check-up was made, and they took my measurements in order to have a seat especially made for me, which will allow my back to be properly held. Which should help me make a lot of progress, as my hands will then be free to play. I’ll get it in two weeks’ time.
Moreover, since the beginning of January, I’ve been having physiotherapy to stimulate my body globally, I’m still going to the “swimming-babies” classes at the swimming-pool with my elder brother who is then having a hell of a good time! For the moment, I just stay in my parents’ arms, but I do like being in contact with water.
Well, that’s all now, till next time for some more news!
2004 started quite well with a good month of January: at that time I’m 10 months old, my weight is 6 kg 620 (=about 13 pounds) and I’m 70 cm tall. But in February, well that’s another story, for in I am again with bronchiolitis, together with cutting 3 teeth at a time! Within just one day, I’m throwing up all my bottles and even having short fainting fits. Consequently, I’m taken to the paediatrics emergencies and in less than 3 days, I’ve already lost 400 gr. I’m very weak and they give me some oxygen and a perfusion. I’ll stay in hospital for 4 days, having lung physiotherapy twice a day; but I go on throwing up my bottles and losing weight (Mummy will later understand that I also have gastro-enteritis, but nobody had thought of changing my milk!).
Back home, I have to stand very heavy medication (Augmentis, Motilium, Gaviscon Babyhaler…). Mummy quite quickly drops Motilium and Gaviscon because I just hate them, I spit them out and they don’t even prevent my vomiting. No, there definitely is something else, so Mummy changes my milk to a “diet” milk and, after a few days, I do feel better! Apart from my burning buttocks (thanks to Augmentin!), I’m getting back to some strength again and some weight too (I’ve lost 500 gr. – 1 pound).
At the end of February, I’m back to my original weight and liveliness, so that my parents are able to go skiing with my brother – and an easy mind. As for me, I’ll stay with my Granny – skiing will be for some time later for me
And there we are, it’s already April 2nd 2004, and I’m blowing my very first birthday candle (blowing? Well, that’s a bit too difficult for me, but Sabine, my child-minder, has made a birthday cake with one candle on top, put the cake in front of me and taken a photo – just for future generations to know! Mummy would have been so pleased if I could have reached those 7 kg for my first birthday but, just to tease her, I only weigh 6 kg 970! All the same, that’s not so far, you see! On the other hand, I am rather tall (71.5 cm) and my head-circumference is still growing (43.5 cm).
I go on being everyday livelier, getting more and more interested in things, and my Dad is really a great favourite of mine and keeps making me laugh all the time! BUT, tooth No. 6 is then cutting and, guess what? Of course, you know: Yes, bronchiolitis again! And yes, I do know the physiotherapist quite well now: In fact, as soon as she arrives, I start crying! Although Laurence is quite nice and helps my lungs expectorate my mucus. When I can talk, I’ll say thank you to her – but by that time maybe she’ll have already retired! (Mummy, please, now you stop it, making me say all that lot of nonsense…)
Apart from that, it has been decided that I would keep my child-minder (my nounou) next year, rather than go to nursery-school: there will still be time enough for me to go to community places (don’t forget that I’m often sick) and indeed I do love it at Sabine’s with my “little” buddy Lina who is a fortnight younger than I!
As a good start for the month, I have chickenpox (all the kids at my nounou’s have it too!), and I’m quite a sight! I’m completely disfigured with pimples. Two days later, I have a secondary infection with a temperature of 40°C. My Dad and Mum are starting to be afraid, because I’m to get heart surgery on June 4th – and for that, I must be in good health!
With all that, my progress is quite slow: but one must not forget that I’ve had very little rest with my health problems since January.
At the beginning of June, I’m perfectly well and Mummy is ready to go to hospital with me for 10 days – a hard time for my brother but, well, I simply couldn’t do without my Mum near me! On June 2nd in the morning, we are ready to go to Marie Lannelongue Hospital (in one of Paris suburbs), one of the best hospitals in Europe for heart surgery! Except that, on that very day, I’m starting a cough – and Dad and Mum know all too well those premonitory symptoms of a dental bronchitis!!! Well, here we are, going all the same. But when we get there, the nurse immediately tells us that Mummy will not be able to stay with me, as there is no room for her!!! But Mum says that she just can’t think of leaving me alone, explaining my case and situation – so that things eventually get to be settled and Mummy can stay with me! On the Thursday, I’m undergoing several tests (blood-test, lung X-rays, echography, ear, nose and throat check-up,…). But I’m still coughing and having a temperature of 38°.5 C in the afternoon. No doubt: one more tooth is cutting! So that, in the evening at 7 p.m., the doctors are deciding that Elsa will not be operated: no risk is to be taken at all!
And there we are : things will have to be started all over again. We go back home, and Dad and Mum resume planning surgery for mid-August!! As soon as I’m back home, I’m feeling much better, even if I go on coughing a little!
Time for holidays and, although the weather is bad, I’m in good health so my parents can enjoy a small week away, just for the two of them: Grandpa (Papi) and Granny (Mamie) are taking care of me and my brother. All goes perfectly well, I’m in perfect health, I never whine or grumble and am always a happy little girl. Except for my constipation problem, everything goes smoothly and, at the beginning of August, I am 16 months old, 76 cm tall, my weight is 7 kg 700 (a little more than 15 pounds) and my head-circumference is 44.5 cm. One small week more at the seaside before the surgery which is to take place on Friday 13th (we are not a superstitious family!).
On the 10th of August in the evening, here we are, back home (my brother is staying at the seaside with my Papi and Mamie) and there is a message for us on the phone: the operation is cancelled because some new-born babies with severe heart problems have to be operated first, on emergency schedule – and there is no possibility for me at the moment! Mummy just nearly got crazy then but… well, that’s it: things can’t be changed so far. On the very next day, a new appointment is made for September 24th!!! So that we can enjoy the end of our family holidays! See you soon!
September 22nd 2004: we start for Marie Lannelongue Hospital and the so long wished-for surgery. I have been in super-health for the last 3 weeks but Lucas and Mummy are having a cold and I start coughing on that very morning (this just reminds me of something).
September 23rd: after the tests, they decide that I’ll undergo surgery on the next day at 2 o’clock p.m. But, in the evening, Mummy feels I’m quite hot, which is true: I’ve got a temperature of 38°7 C!!! They give me some Efferalgan and I spend the night just with my diaper on: the next morning, my temperature has gone down and the doctors say that yes, the operation will definitely take place as scheduled. But the tests results arriving just then, they say that I’ve got a pneumococcus just starting to grow (it is a virus causing lung infection). So, for the moment, it becomes impossible for me to be operated. At the news, my Mummy remains quite calm this time, but she just can’t believe it! But on the other hand, they’ll keep me in hospital so as to cure that infection with antibiotics and postpone the operation till the next Friday. Mummy goes back home for a little while because Lucas needs her too!
On the following Wednesday, I’m much better and the operation will be possible on September 10th. So that now, I think I’m in for it: this surgical operation is a 4 hours’ one and consists of setting a “patch” in, so as to close the IVC (inter ventricular communication) and scraping clean the pulmonary artery. Everything goes well and, for my surgeon, it is just a regular daily operation!
On the Saturday, Dad and Mum come to visit me in the intensive care unit: catheters, drainage tubes, dressings, electrodes: it’s quite difficult to catch a glimpse of me among all these things, but I seem not too bad, and I even smile when I see my Dad and I drink a bottle of 180 ml of milk!
The next morning, I can leave the intensive care unit, I feel perfectly well, and here I am again jerking my legs around and eating with a good appetite… But I find it difficult to get a rest with all these nurses coming for medical care each time I try to get some sleep. Yes, I’m being wakened up again and again for blood-pressure, temperature, etc… Of course, all this is very important but I do start being fed up with it all, and I’d so much like to go back home.
On Friday, October 8th, Papi and Mamie come to fetch me, and I’m so happy that Papi gets a beautiful smile from me! I’m really happy to be back home, to see my brother, my parents, and all my familiar surroundings; I’m back to my good health and I’m just as lively as before. My thin scar is just the one thing that could tell that I’ve undergone surgery! Life goes back to its normal pace, I’m just supposed to see a cardiologist once a week for a month and, after that, it’s over! Finished!
I’m 18 months old, my weight is 8 kg (16 pounds), I’m 76.5 cm tall and my head-circumference is 44.5 cm;