I joined in 1974 when you were called The Foundation For The Study Of Infant Deaths.
i acted as a councillor for many years until life became too hectic as age 15 I was told I would never have children. Our eldest son James is adopted, thankfully he doesn't remember Robin's death now but he did at the time. He has been an amazing son and my husband and I adore him. He now has a lovely wife and two beautiful children of his own. Robin was not a typical cot death, if there is such a thing. I have spent my life questioning why he died and how as the post mortem showed nothing at all. I'm certain now he must have had a slight prolapse of the mitral valve of his heart. It only takes 20 seconds I have researched. I was born with Lupus and by 21 I had Sjögren's syndrome. Most people who have Sjögren's the baby suffers from heart block or neonatal lupus Noeonatal Lupus is a rash that will go quickly and does NOT mean your baby has Lupus. Please if you have Sjögren's tell your gynaecologist, your GP and your dentist as the sicca symptoms can present before you get a positive test the same with Lupus. Please tell everyone that you know especially your gynaecologist. I inherited both from my mother who had APS. My father gave me Ehlers-Danlos. There are 10 types so the combination of Lupus and EDS really wasn't helpful for me to inherit. However I have, so I feel I must tell you. If you have hypermobile joints please try not to worry as I'm sure that you and your baby will live a long and very happy life, besides there is no test for type 3 the hypermobile type. It would be wise to tell your GP and certainly your Gynecologist if your hypermobile. However there is a type that can be dangerous both to you and your baby. If you suspect you have any types other than the hypermobile type please ask to be tested. Unfortunately I'm not the hypermobile type which is why I am writing this. I still await a genome test after 69 years of pain and loosing Robin. I won't wish to worry you with what I suspect but please tell your GP if you have Ehlers-Danlos or Lupus and certainly if you have Sjögren's as they can do amazing things now for your baby to prevent neonatal heartblock, They can put a tiny pacemaker into your baby 's heart before he/she is born. If you suspect you have Lupus or Ehlers-Danlos your GP and gynaecologist will help you as much as they can. You and your baby will get the very best care before and after the birth and the Lullaby trust will suggest apnea monitors. Good luck to all you young mothers, I'm sure you will have healthy babies and now with the new sleeping methods, the suggestions you don't smoke, drink alcohol and eat healthily I'm sure you will have fit and healthy babies. I'm just glad I have found out the truth as for decades I have lived with the guilt that I should have tipped Robin upside down. That was the advice of the ambulance man in 1974. He took over an hour to get to me. In that time I had done mouth to mouth and heart massage, so for decades I wonder what if! In truth I doubt if it would have made any difference. Thank so much to the Lullaby Trust to tell my story. PS We went on to have 3 more sons all grown up two have children of their own, the third hasn't reached that stage yet!