The story of a lost hand

The first meeting of the mother with her newborn daughter: "This child has a problem… A hand is missing". These were the words of Dr Toma, from Giulesti Maternity (Bucharest, Romania), immediately after Ioana Maria was born. Dry, without compassion and with no preparation for a mother that collapsed under the terrible news.

Ioana Maria was born without the right hand and forearm. More precisely, according to the Medical Letter of 15/07/08.

After we came back to ourselves and started to get used with the idea, we wanted to find out what really happened. We had already received from the same doctor a ‘professional explanation’ that concluded (although no one knows on what grounds) that our genes bear the guilt: "All your children will be affected, since the genetic defect is autosomal dominant..."

These words were abruptly uttered like an irrevocable sentence, merely two hours after birth, in front of the shocked parents who did not really understand what was going on.

Subsequently, the genetic test was made. The result was negative. Neither Ioana Maria nor us the parents present genetic anomalies. Nobody in our families present any such malformation so that this could have not been transmitted dominant autosomally.Then, what really happened to the forearm and hand of our daughter?

Can anyone expect from the medical personnel, which usually work under great stress, to always show a sign of humanity to all their patients? Perhaps our maternities should be provided with psychologists trained to deal with special circumstances occurring with the patients and their families.

We were told that among the possible causes of this diagnostic might count a chemical substance (medicinal drug), a virus or an amniotic band that would have constituted obstacles to the normal growth of the hand.

Unanimously, doctors from overseas have concluded that an amniotic band was the factor that intervened before the fourth month of pregnancy. After the fourth month, the physical trauma generated by the amputation of the hand would have led to death.

In our case, Ioana Maria’s mother has taken no less than 8 ultrasounds from the doctor that assisted her throughout pregnancy. Almost all these ultrasounds have been made at the private chambers of Dr Moisa, who is also an employee of Giulesti Maternity. Also, the mother has taken the famous 3D scan for the visualisation of the foetal morphology, through which all parts of the body were measured and compared. This 3D scan have been performed at Philanthropia Maternity by Dr Valentin Varlas. In all these investigations, everything looked normal.

So, why would have we doubted the resolutions of these experts and on what grounds? However, our trust was betrayed. Then, what would have been the best course of action during pregnancy? It would have been necessary to ask them to explain step by step and to repeat the procedures any time we would not have understood properly or found something suspicious.

Along with the positioning of the foetus and its heartbeat, the doctor that performs the ultrasound can and has the duty to observe any possible anomalies during the procedure. And here begins another story.

Discovered in due course, such problems could have been solved 100%. Certainly, not in Romania. And this is actually our pain. If the doctors would have payed a little more attention, you would have not read this story and Ioana would have been a perfectly healthy child.

Perhaps nothing of all these happened by chance… God knows.

Normally, the correct monitoring of pregnancy falls exclusively under the responsibility of the medical personnel. However, given that in Romania everything happens differently comparing to the civilised countries, medical procedures should be constantly and thoroughly checked by the patient/beneficiary.

Situations of this kind might occur indeed in other countries (USA, Australia, France, Germany) but their consequences have no term of comparison in Romania. The Australian surgeon Dr Sean Nicklin told us: ‘such things may happen even here (in Australia) yet those responsible pay with their career and freedom’.

What can be done?

Given the circumstances, we have agreed with the solution proposed by the team of Australian doctors that consulted Ioana. They have suggested us to delay for two years any intervention on Ioana’s arm, in order to avoid further trauma, and then to consider one of the existing technologies at that time. For the time being, the bionic prosthesis seems the most suitable.

The cost of the prosthesis, the surgical interventions, the following treatment and the counselling program necessary to ease Ioana’s social integration go far beyond our possibilities.

In this context, the help coming from each and every on of you may ensure a different future for Ioana. Any donation, no matter how small, matters.

May God bless you all!