“You’ve studied genetics, you need to get rid of a disabled child,” – said the doctor

Doctors insisted on abortion, put the baby multiple malformations. But for moms abortion was unacceptable… for such cases in Moscow will open a perinatal hospice. And the story of Helen resulted in the birth of a beloved son.

  • 17 people with autism and down syndrome who have achieved great success
  • 50 mom, 50 children and one extra chromosome
  • Down Syndrome. It happened to us
  • “Giovanni is Giovanni. Not just a boy with a syndrome”
  • “I have a rapier in my head, and classmates sing the “our father””

The doctors looked at the monitor and I had to rely on the will of God

The fifth pregnancy of Elena Stepanovoj (name changed – ed.) did not differ from the previous one – the same severe morning sickness. At 19 weeks she went to become on the account in female consultation. Directions on tests, the ultrasound.

Day first ultrasound in the regional perinatal center – 13 October 2016 Helen remembers as if it happened yesterday. The doctor-uzist long, and stared at the monitor, then began to call colleagues, those came into the office and began to study what is happening on the screen.

I was looking at long lights and somehow calmly, though with a hint of anxiety, thought: “For all Thy Holy will, Lord! Only Your as You manage – so be it”. I first felt it fully depend on the will of God.

– Urgently to genetics gave doctors the verdict, and said that it was important to get to experienced the famous doctor, who, to the General joy, in the workplace, although it was supposed to be on vacation. Again the doctors crowded around the monitor, and the geneticist confirmed the forecasts of the colleagues. The baby multiple congenital malformations syndrome Dandy – Walker, a congenital heart defect, aplasia of the nose, median cleft palate (cleft palate and cleft lip) and down syndrome.

– I was lying on the couch, listening to everything, and in a head only one, all the same idea: “all Your Holy will!” Tears from the eyes rolled themselves.

From that hour began my meal: going to doctors and full-term my “wrong” in their view, pregnancy.

You’ve studied genetics: you need to get rid of a disabled child

Doctors, without hesitation, insisted on termination. Elena was sent home for a few days to think and make the “only reasonable”, according to doctors, the solution. But Elena and her husband not even for a moment not think that they will kill their baby.

– Going prenatal consultation, to which a geneticist, very cheerful and confident woman, impulsive, told me: “Why do you deep disabled? You have so many children!” The ratio of doctors to not describe words. They talked to me like I have the nuclear threat to humanity. Some eminent geneticist smoothly, quietly and convincingly, he thought, told me what fate awaits me, if I have a baby. Looking at its pathology – it seemed as if a piece of language is tied up with coarse threads, I casually thought, “I Wonder if with ultrasound screening his mother said her son is a malformation she would have left him alive or killed?” The doctor continued: “Well, you have a higher education! You’ve studied genetics! Selection! How can you not understand? You need to get rid of a disabled child”.

All this was perceived by Helen as some sort of bad dream are more real and more important was the message just before the Council sent the parish priest, who was then on mount Athos: “Now the Lord carries you on hands, remember that.”

The verdict of the prenatal consultation, chaired by the chief of the genetics field was: “the Family warned of the serious non-modifiable malformations of the fetus and refused early delivery”.

Constant, crushing stress

With the 19-th week Elena kept thinking about the baby, about what it will be. But the experience of the future baby was nothing compared to what’s stress got pregnant from communicating with doctors. Constant, crushing stress. She calls it the worst moment of pregnancy.

They don’t give us the right to decide, we are tormented, humiliated. Back at the precinct women’s clinic, I again went through the Council, now the district of gynecologists, they gathered in different words tried to convince me to abort my pregnancy. And only one of the doctors, the most noisy in ordinary life, a gynecologist from a nearby site came and loudly said, “Leave the woman alone! It’s her choice and she can live with it!” Then all quietly dispersed.

A second Elena had no doubt of the correctness of our decision. She just could not imagine that there may be options. It’s something about the child and about his mother.

Several times I had to call an ambulance to go to hospital – the threat of early preterm birth. Most likely – precisely because of the pressure that felt Elena from the doctors, because pregnancy need not to be nervous, but as if instead of supporting continuous: “Why didn’t you terminate the pregnancy?” This question was asked by the doctors during each emergency hospitalization.

No, not all doctors are engaged in the pressure – there were happy exceptions. For example, Elena was very supportive, a believer, a gynaecologist from the regional hospital, she gave advice, explained.

In Facebook, I found Lydia to Monievu of children’s hospice “the House with the lighthouse,” which among the countless Affairs, found a way to answer my confused messages during pregnancy. She was the first person after birth, which is clearly explained to me that down syndrome is not scary, she gave me the contact Irina Pantaeva, who was the daughter of Theodore and Victoria Stroinoi, parent of the girl Lena.

With Irina, we got in touch and after talking with her around shone like a rainbow, she surprisingly told me about his daughter, about her husband, about the family. Irina was crying, saying that a special child is happiness: “You will be the happiest people on earth, because you have angel.” Victoria Stronina sent me a link to the film “Native people” about Helen. And it was the most important moments in March 2017.

The main feature of the baby – it’s impossible not to love

But it will be later, after the birth. Half an hour before birth on ultrasound again came to the doctors, who said: “the Child is not viable”.

My fifth birth took one of the best doctors of the region (most likely due to the fact that my exchange card was riddled with diagnoses of “fruit”), his actions were clear, professional. When my baby was born, his voice was so clear, so bright. At this moment I really felt like struggling want my son to live. No matter what lame, humpbacked – any!

After birth the baby was taken to intensive care, the mother in the postnatal ward. There came in neonatal resuscitation and have a question about the syndrome Dandy – Walker replied that such a syndrome in a child is not. Elena every time with impatience waited for the moment when she was allowed into the ICU to see the son – in her opinion – the most beautiful baby in the world.

A week later, on March 21, the day of people with down syndrome, came the result of the analysis of genetic diseases: down syndrome.

– To me, this verdict seemed so insignificant after everything. Soon the boy was transferred to the perinatal center, there we met Elena Chernomazova, a leading neonatologist, very attentive, friendly and most importantly – considerate doctor. A month later we have removed the diagnosis “congenital heart disease” which was made after the birth. No vices.

Down syndrome for me – a feature of the development of the baby, his kindness, gentleness, amiability, and great love for all of us. Our fifth baby is our great joy, beloved son and brother.

Once the youngest of my sons comes up and says to me: “Mom, you know our baby is special? Feature this – it’s impossible not to love!”

Older kids love the baby, you hear: “Mom, look, look, what it at us pretty! Mom, he’s the sun!”

Live and not afraid of anything

Yes, family, loved ones, the parish priest, a friend of the parish, as well as the people that Elena found with Facebook, help. Without their prayers and support it would be difficult. But not everyone who crosses your path, who lives with Elena in the same city, so friendly. She has not yet learned to perceive the negativity aside, and not just when she is rude to the sounds of your child.

– Surprising and often affects the attitude of the intelligent and seemingly educated people; school Director, woman at the age of, roughly said: “It would be another 70 years gave birth to, down!” A pediatrician (chief doctor of the district hospital part-time) for a few months, by signing a referral to any specialist, always added the line: “Woman refused abortion at 19 weeks.”

It was her “guidance” when making bags of sheet on medical-social examination: “Here people don’t draw up a disability, hope for the best, and you want money chased” or “I won’t let you focus on the analysis, make it paid, well you get a pension for the child”. In the first months of crying from helplessness and powerlessness. Didn’t understand how to change the attitude towards our child how to make so that its not considered a outcast. Didn’t hide the baby from anyone, but often caught glances astonished and frightened, as if expecting to see a Piglet on her face, and saw the usual spout.

Now, after almost a year and a half after the birth of our Sunny boy, I can say the words Irina Pantaeva: “You’ll be even more to love this baby. It is a miracle. More afraid of anything! It is best for you!” This is how I live, with a miracle in the house, affectionate, dear and most beloved! And not afraid of anything.

Leave a Reply

Your email address will not be published.