Our youngest son is a child with extra bonuses.<\/p>\n
Our son was born after 36 weeks of pregnancy\u00a0suffering from\u00a0the HELLP syndrome. I had a lot of stress during my pregnancy. Pains and discomforts were attributed to me\u00a0‘being pregnant’, so I was afraid to make a fool of myself. Until I had an emergency delivery at 36 weeks, my blood pressure was far too high, liver and kidneys were not working well, blood was too thin \u2026. Afterwards, it was explained to\u00a0that it\u00a0had been\u00a0a life-threatening situation for both L. and me.<\/p>\n
Our son was born on June 27th. Our lives turned into a roller coaster, one that we still seem to be on. He was born completely blue, with dark purple hands and feet. The blood flow\u00a0in the tongue was checked immediately. That was good, so our boy did not have an oxygen shortage. He was transferred to neonatology, his skin colour turned much redder, he couldn\u2019t get his blood sugar levels under control and his blood was far too thick.<\/p>\n
The dermatologist came to see him immediately and because he did not know what our son suffered from, A professor in genetics of the University Hospital in Li\u00e8ge was called. He managed to tell us that our son has CMTC. He has stains all over his body, even though CMTC is usually only found on half the body or on a particular body part. Our son was fully checked, nothing alarming was found.<\/p>\n
After two weeks he was allowed to go home. Because we didn’t really know how things would go we were worried. Every two weeks he was examined by the paediatrician.
\nHe developed somewhat slower than his two older brothers. According to the paediatrician, we didn’t have to worry (what you do as parents). He often suffered from digestive blockages and had to get regular\u00a0enemas. He also had to drink soy milk. At 8 months it turned out he had hidden reflux and was hospitalized several times with respiratory problems.<\/p>\n
He was a very quiet and happy baby. We still don’t know if he has any pain when his colour changes.<\/p>\n
The discolouration has been decreasing over the years. If he is warm, you will hardly notice anything. If he is cold or ill, he will come back completely spotted and blue.<\/p>\n
Meanwhile, our son’s development continues to be slower than usual. He only walked at 22 months.<\/p>\n
People often look at us and ask if he is cold because his nose and cheeks often\u00a0turn red.<\/p>\n
By the time he turned three, he started\u00a0going to school. The later development is now very apparent. He does not talk yet, still flaps his arms. He is very well taken care of\u00a0at school. Everyone at school is informed about the skin condition. When it gets colder outside, he plays inside or he may go with the teacher to the teachers’ room. Only once he had an extreme discolouration at school. It took very long to warm him up.<\/p>\n
Our son loves to go to school. He gets help from the support team in the classroom. He also has speech and play\u00a0therapy, physiotherapy\u00a0and reflex integration.<\/p>\n
We do see progress though. He has started to play and do arts and crafts. He\u00a0even started talking through intensive coaching.<\/p>\n
No doctor or professor has seen a child like our son. Not only does he have CMTC, but he also develops much slower. DNA testing does not show any abnormalities. A genome study\u00a0is now being carried out.<\/p>\n
We only hear that we are doing well, but nobody can tell us what the future may bring.<\/p>\n","protected":false},"excerpt":{"rendered":"
Our youngest son is a child with extra bonuses. Our son was born after 36 weeks of pregnancy\u00a0suffering from\u00a0the HELLP syndrome. I had a lot of stress during my pregnancy. Pains and discomforts were attributed to me\u00a0‘being pregnant’, so I was afraid to make a fool of myself. Until I had an emergency delivery at […]<\/p>\n","protected":false},"author":2,"featured_media":2564,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[161],"tags":[],"class_list":["post-6874","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-personal-stories"],"acf":[],"yoast_head":"\n